The MOST Up-to-Date ADHD & Women's Health Research with Professor Sandra Kooij
This week's guest is the esteemed Professor Sandra Kooij, a pioneer in adult ADHD research and professor of psychiatry at the Dutch Expertise Center for Adult ADHD. Since 1995, Professor Kooij has been at the forefront of groundbreaking studies, particularly focusing on ADHD in adults and women.
Together, we delve into the evolving understanding of ADHD, particularly in women, and how hormonal changes throughout life stages—puberty, pregnancy, and menopause—impact ADHD symptoms. Professor Kooij shares insights on the connection between ADHD, hormone fluctuations, cardiovascular health, and immune function. Sandra also offers practical advice on managing ADHD through medication, lifestyle, and hormonal treatments, providing women with more tools to improve their well-being.
On today's ADHD Women's Wellbeing Podcast, Kate and Sandra speak about:
- Where her interest in adult ADHD came from
- Sandra's groundbreaking research
- ADHD and developing knowledge of the hormone connection
- The potential connection between COVID and ADHD
- Leading findings in adult ADHD research
- Perimenopause and ADHD
- Women with ADHD and their cardiovascular health
- Sandra's world-leading research on ADHD and dementia
Timestamps:
- [03:12] How ADHD in adults was first recognized in the 1990s
- [10:34] ADHD and the connection to hormone fluctuations in women
- [18:55] The role of estrogen and dopamine in ADHD symptom management
- [25:40] PMDD, postnatal depression, and early menopause in women with ADHD
- [32:15] Cardiovascular and immune health concerns for women with ADHD
- [40:48] The risk of dementia and cognitive decline in older adults with ADHD
- [48:30] The impact of long COVID on ADHD and immune function
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You can find out more about all the work that Sandra does here.
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Kate Moryoussef is a women’s ADHD Lifestyle and wellbeing coach and EFT practitioner who helps overwhelmed and unfulfilled newly diagnosed ADHD women find more calm, balance, hope, health, compassion, creativity, and clarity.
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Find Kate's resources on ADDitude magazine here.
Transcript
Welcome to the ADHD Women's Wellbeing podcast.
Kate Moore Youssef:I'm Kate Moore Youssef and I'm a wellbeing and lifestyle coach, eft practitioner, mum to four kids and passionate about helping more women to understand and accept their amazing ADHD brains.
Kate Moore Youssef:After speaking to many women just like me, and probably you, I know there is a need for more health and lifestyle support for women newly diagnosed with ADHD.
Kate Moore Youssef:In these conversations, you'll learn from insightful guests, hear new findings and discover powerful perspectives and lifestyle tools to enable you to live your most fulfilled, calm and purposeful life, wherever you are on your ADHD journey.
Kate Moore Youssef:Here's today's episode.
Kate Moore Youssef:I'm absolutely honoured today to have Professor Sandra Coyenne here from the Netherlands, and I know her biog is hugely esteemed.
Kate Moore Youssef:It's long, but I just wanted to give you a little bit of background information about Professor Sandra Coy.
Kate Moore Youssef: Amsterdam and she started in: Kate Moore Youssef: And in: Kate Moore Youssef: And so since: Kate Moore Youssef:And now a new ADHD app, superbrains.
Kate Moore Youssef:I mean, there's just so much there.
Kate Moore Youssef: But I just know from since: Kate Moore Youssef: search from starting there in: Kate Moore Youssef:What are those huge changes that you have seen and that you've been part of?
Professor Sandra Coyenne:Well, in the beginning, ADHD in adults did not exist.
Professor Sandra Coyenne:So when I found out that one patient with borderline personality diagnosis didn't seem to fit in the criteria, I learned about ADHD at the childhood ADHD conference.
Professor Sandra Coyenne:And there I heard that it could persist in adulthood for the first time.
Professor Sandra Coyenne:It was not in the books, nothing.
Professor Sandra Coyenne:There were no interviews.
Professor Sandra Coyenne:And then I suddenly realized that she might have ADHD and that I wanted to test on her and her family.
Professor Sandra Coyenne:That was the very beginning with one patient, actually, and I had to study a lot to make this diagnosis for her because I was virtually ignorant.
Professor Sandra Coyenne:And this diagnosis fitted very well and the family cried because it was such a real prescription of her problems.
Professor Sandra Coyenne:Of course, I didn't try to treat her immediately with stimulants because I was afraid and nobody could guide me.
Professor Sandra Coyenne:I was still in education for psychiatrists.
Professor Sandra Coyenne:I was very young, but I was curious.
Professor Sandra Coyenne:So I went to the United States to follow courses with the ADHD experts in the United States.
Professor Sandra Coyenne:I read their books and all the research that was out, it was little, it was few, so it was easy.
Professor Sandra Coyenne:And then I started publishing my first paper on this girl and what I learned from the literature.
Professor Sandra Coyenne:And then I started research because there was nothing, and people don't believe it if they don't see numbers and opinions, of course.
Professor Sandra Coyenne:And so it all started.
Professor Sandra Coyenne:So I started from scratch and everything in my country that we now have, like instruments, like protocols, like a guideline, the dutch guideline, I was involved with, and I taught a lot of people with interest in order to get more people, give more people access to care, because one person can easily be overwhelmed, and then it stops, and we need a general knowledge everywhere in the country.
Professor Sandra Coyenne:So I founded the dutch ADHD network, the european ADHD network of professionals, to unite and support each other and to organize courses and trainings.
Professor Sandra Coyenne:And I still do now digitally in the ADHD power bank, so that I don't repeat myself too much and that I can add new stuff all the time.
Professor Sandra Coyenne:I like all three.
Professor Sandra Coyenne:Patient care, teaching, and research.
Professor Sandra Coyenne:Because you need new information always to be up to date and to educate people to have better lives and to share knowledge with the world with patients and professionals.
Kate Moore Youssef:Yeah, I mean, I think what you just said then, better lives.
Kate Moore Youssef:You know, we've seen historically people with ADHD, especially when they're undiagnosed, they tend to have much harder lives, much more difficult lives, riddled with health conditions and have had decades of negative self talk, whether it's internal and external, and not being able to understand themselves and people not understanding them, it's awful.
Kate Moore Youssef:And we know that people with ADHD have a much shorter lifespan as well.
Kate Moore Youssef:And so I think what your mission has been to be able to just say, to help people have better lives and to thrive and to live alongside their ADHD, because we know that's not going away.
Kate Moore Youssef: ou know, back from, you know,: Kate Moore Youssef:And from someone that has worked in this area for such a long time and you've seen things evolve, do you still get a little bit despondent by the fact that so many psychiatrists and doctors are still not understanding the impact of undiagnosed ADHD?
Professor Sandra Coyenne:Yeah, of course, that's very annoying, but it only means that they're not well informed.
Professor Sandra Coyenne:So I keep educating all the time because that's the only way to teach and to learn them, that an opinion is not enough, that you need to read the literature, that you need to read books that are available, knowledge is available.
Professor Sandra Coyenne:And now I made videos on it for the ADHD powerbank to make it more easy and accessible for everyone so that you cannot claim you have never heard of it or never could read anything about it.
Professor Sandra Coyenne:Yeah, it takes a long time because it should be in the education of psychology doctors and psychiatrists, of course, and nurses, and then it's normal, then it's.
Professor Sandra Coyenne:Then it's part of the package that you need to learn.
Professor Sandra Coyenne:But if it's not, it's always something new, something discovered lately and, yeah, that doesn't work.
Professor Sandra Coyenne:People should learn it from the start.
Professor Sandra Coyenne:And so I have been fighting to get it into the education for a psychiatrist and I succeeded, but it's a voluntary part of the program and if they don't choose to look at ADHD, they don't need to.
Professor Sandra Coyenne:So that's annoying, again, because it's.
Professor Sandra Coyenne:20% of psychiatry suffers from ADHD, so under every diagnosis, other diagnosis, 20% of people also have ADHD.
Professor Sandra Coyenne:That's nectar, that's not treated, that's making them chronic.
Professor Sandra Coyenne:And that hurts my soul in the way that I cannot stand it, that it's.
Professor Sandra Coyenne:Well, life is not perfect.
Professor Sandra Coyenne:I'm not perfect and my life is not long enough to get everything done, but I do my best.
Professor Sandra Coyenne:And these are still gaps.
Professor Sandra Coyenne:Indeed.
Kate Moore Youssef:Yeah.
Kate Moore Youssef:I mean, what you've done over the years is unbelievable.
Kate Moore Youssef:And just reading that out, and if anyone wants to google you, you'll be able to come up with all the papers and the research that you've been part of.
Kate Moore Youssef:And it has made a huge change, even just from myself, who's been in this world for five years now, and I know that your name came up very early on at the beginning when I started researching about ADHD and hormones and understanding the connection, maybe we can start from there.
Kate Moore Youssef:But just before we do, I just wanted to touch on what you said about the psychiatrist, because to me, I'm not a doctor, I'm just someone that knows quite a bit about ADHD and works with a lot of people with ADHD.
Kate Moore Youssef:I can see straight away with other mental health conditions how ADHD plays into the mix, whether it's disordered eating, whether it's anxiety, there's OCD.
Kate Moore Youssef:Like, I can sort of see the ADHD, like, at the root and then it being the branches and, you know, the, like, the leaves and everything, all the other conditions.
Kate Moore Youssef:And I just can't understand how a psychiatrist who is assessing someone wouldn't see that ADHD could be the root cause.
Kate Moore Youssef:And if we tackle that, then hopefully the other things may kind of lessen slightly.
Kate Moore Youssef:I can understand why that must hurt your soul quite a bit.
Professor Sandra Coyenne:Yeah.
Professor Sandra Coyenne:Yeah.
Professor Sandra Coyenne:Because here it is and please take it.
Professor Sandra Coyenne:But, yeah, we can force people to learn.
Professor Sandra Coyenne:You can only make them curious.
Professor Sandra Coyenne:Yeah, that's what I try to do all the time.
Professor Sandra Coyenne:And not blaming anyone for not knowing, but inspiring them to learn.
Kate Moore Youssef:Yeah.
Kate Moore Youssef:And the good thing about people with ADHD is that we are curious.
Kate Moore Youssef:So when we have the epiphany of, oh, my goodness, you know, whether it's been someone that's told us or we've realized, we've read an article, we then go down the rabbit hole and do a lot of research.
Professor Sandra Coyenne:I know, I know people, people as ADT teach me all the time what I should do next.
Professor Sandra Coyenne:So they are so think out of the box, and that's very, very helpful and necessary to proceed.
Kate Moore Youssef:Yeah.
Kate Moore Youssef:So I'm interested to know.
Kate Moore Youssef:So we've talked on the podcast quite a lot about hormones, and we've talked about the impact and where it shows up and whether it's, you know, puberty, pregnancy, post pregnancy.
Kate Moore Youssef:Unfortunately, there's a much higher risk of postnatal depression.
Kate Moore Youssef:Now, we understand with neurodivergence in women.
Kate Moore Youssef:And so I was wondering, what is there anything new that you're learning that you're understanding now and what should.
Kate Moore Youssef:And I'm going to go back to kind of like psychiatrists and psychologists and anyone that works with women.
Kate Moore Youssef:Why are we still not seeing this kind of filteration of understanding that hormones directly impact ADHD with girls and women?
Professor Sandra Coyenne: tudying women and hormones in: Professor Sandra Coyenne:And I was one of the speakers and I answered the question of my patients.
Professor Sandra Coyenne:Please study us.
Professor Sandra Coyenne:Please pay attention to our hormones.
Professor Sandra Coyenne:Please look at PMDD.
Professor Sandra Coyenne:We suffer a lot every month, and nobody has any idea what it means and any idea how to help us properly.
Professor Sandra Coyenne:We can use SSRI's that was known at the time, but nobody knew why this happened and how often it was happening.
Professor Sandra Coyenne: was the paper from Dorani in: Professor Sandra Coyenne:They were suffering two to three times as frequent, as often from premenstrual depression, not PM's, but depression.
Professor Sandra Coyenne:So the more severe form, including suicidal thoughts.
Professor Sandra Coyenne:And this was really not a tiny thing, it was worrisome.
Professor Sandra Coyenne:And they were depressed and impulsive, so that's really dangerous.
Professor Sandra Coyenne:And then postnatal depression was three times increased compared to the numbers in the general population.
Professor Sandra Coyenne:So 60%, 58 to be precise, reported having had at least one postpartum depression.
Professor Sandra Coyenne:That's not normal, that's highly abnormal, because it means something.
Professor Sandra Coyenne:Same was true for perimenopause.
Professor Sandra Coyenne:So we knew from that moment that we had something that we really need to pay attention to, because it was not a story that there were 200 women reporting on one day in the conference.
Professor Sandra Coyenne:So it's a good way of studying and getting numbers.
Professor Sandra Coyenne:But then I repeated the same study in the department where I worked, adult ADHD department, among also 200 women, and we got the same number.
Professor Sandra Coyenne:So this was a replication study with real diagnosed women.
Professor Sandra Coyenne:I couldn't be certain of a diagnosis in this conference group, but I was in my own team and they had similar numbers.
Professor Sandra Coyenne:So then that was confirmed and that was what we published.
Professor Sandra Coyenne:And then we needed to find an explanation.
Professor Sandra Coyenne:And if you dive into the literature, there's nothing about ADHD women at the time, there was nothing about interaction of hormones and neurotransmitters.
Professor Sandra Coyenne:What I suspected, there were very few studies about dopamine and estrogen interaction.
Professor Sandra Coyenne:That was the most interesting part that I found, because estrogen proved to be like a neurotransmitter.
Professor Sandra Coyenne:It's a hormone doing things for our female organs and so on, and we all know that.
Professor Sandra Coyenne:But it's also a compound that works into the brain directly with dopamine.
Professor Sandra Coyenne:And dopamine is the compound we need to pay attention, to Beveregh organized, to be able to plan, to make decisions, to be quiet and have control over our emotions.
Professor Sandra Coyenne:And estrogen basically does similar things for us.
Professor Sandra Coyenne:So we have two hormones or two neurotransmitters, if you like that, do the same if you have ADHD.
Professor Sandra Coyenne:We assume that the brain is suffering from a low dopamine level.
Professor Sandra Coyenne:And when your estrogen drops in the last week of the cycle, or after giving birth or in menopause, you have twice.
Professor Sandra Coyenne:Nothing to control your behavior, your feelings, your cognition, your memory.
Professor Sandra Coyenne:You are not able to fulfill any task that you intended to do in that week and maybe a bit longer.
Professor Sandra Coyenne:So it's really understandable.
Professor Sandra Coyenne:And people, women were so enthusiastic when we wrote this down and gave webinars about it because they said, there's an explanation for us.
Professor Sandra Coyenne:We are not stupid.
Professor Sandra Coyenne:We are not crazy.
Professor Sandra Coyenne:It's not our fault.
Professor Sandra Coyenne:There's a biology behind it.
Professor Sandra Coyenne:Well, of course I cannot measure it, but I hypothesize that this can be good explanation.
Professor Sandra Coyenne:And if that would be true, we cannot measure estrogen in the brain or dopamine in the brain.
Professor Sandra Coyenne:We cannot.
Professor Sandra Coyenne:It's not possible.
Professor Sandra Coyenne:We cannot even use hormone levels in the blood because it's not reliable.
Professor Sandra Coyenne:It doesn't say anything about symptoms.
Professor Sandra Coyenne:There's no correlation between the level of estrogen, high or low, and your symptomatology.
Professor Sandra Coyenne:So that's not a way to go.
Professor Sandra Coyenne:But we can confirm this hypothesis by using medications that increase estrogen levels and or dopamine levels.
Professor Sandra Coyenne:And if that's true, women should improve with one or the other or both.
Professor Sandra Coyenne:And actually they do.
Professor Sandra Coyenne:So although RCT's are lacking still, I can tell you what I learned from clinical practice so far and from a case series that Maxime de Jong recently published.
Professor Sandra Coyenne:What she did was monitoring what women with ADHD are doing already themselves, because they find out it's helpful.
Professor Sandra Coyenne:And this is a little increase of the dosage of stimulant medication in the premenstrual week.
Professor Sandra Coyenne:This is very helpful, and it's easy, but you need to discuss it with your doctor because your prescription will be finished earlier and she needs to understand what you do with the it, he or she.
Professor Sandra Coyenne:But we measured blood pressure and pills and mood and sleep and everything in those nine women only.
Professor Sandra Coyenne:And they all were happy and wanted to continue every month in the premenstrual week with the increased dosage.
Professor Sandra Coyenne:So everybody whose interest can read it, it's on pubmed, so everybody can read what we did, how high the dosages were, and what the women reported.
Professor Sandra Coyenne:So that's good news.
Professor Sandra Coyenne:Of course, it's not RCT.
Professor Sandra Coyenne:It's not randomized control trial.
Professor Sandra Coyenne:What we need to do to prove it.
Professor Sandra Coyenne:And then you give women a placebo versus this increased dosage.
Professor Sandra Coyenne:The other way to go would be increasing estrogen.
Professor Sandra Coyenne:This can be done with the pill continuously.
Professor Sandra Coyenne:So no stop week, because in the stop week, you drop your estrogen again to get this withdrawal bleeding.
Professor Sandra Coyenne:That's normal.
Professor Sandra Coyenne:But in this case, you can continue to take the pill, which is not dangerous at all, in order to limit the chance of getting symptoms again due to drop of estrogen.
Professor Sandra Coyenne:For some women, this is also helpful.
Professor Sandra Coyenne:We don't know yet for whom, which one is best, increasing the dosage of the stimulants or the continuous taking of the pill.
Professor Sandra Coyenne:This should be studied.
Professor Sandra Coyenne:This is next.
Professor Sandra Coyenne:The other way is our three options now is the SSRI, the antidepressants.
Professor Sandra Coyenne:They have been studied in PMDD for a long time ago, and they have been proven effective for improving the symptoms in the last week.
Professor Sandra Coyenne:So you can even take it shorter than the whole month.
Professor Sandra Coyenne:You can take it two weeks because the effect of the antidepressant starts earlier than with normal depressions, and maybe because the fluctuation of the hormones have impact on that.
Professor Sandra Coyenne:We don't know exactly why, but it means that serotonergic medication, dopaminergic medication and hormones interact, which we said in the first place, but also that serotonin can have influence on this process.
Professor Sandra Coyenne:So we have not one, but three options now, potentially, which is good, because not everybody can use every medication and sleeping enough and having a healthy lifestyle and so on is very nice for people who can control themselves.
Professor Sandra Coyenne:But not in this week.
Professor Sandra Coyenne:Absolutely, for women with ADC.
Professor Sandra Coyenne:So it's kind of cruel.
Professor Sandra Coyenne:It's kind of a cruel treatment option to tell them that they should behave better and take care of themselves.
Professor Sandra Coyenne:And of course you should do that, but it's not possible, so it's not a way to go.
Professor Sandra Coyenne:And so I think medicine should think of better options and understand why this happens.
Professor Sandra Coyenne:And if you understand why this happens, how it happens, you can invent the right treatments.
Kate Moore Youssef:Yeah, absolutely.
Kate Moore Youssef:And I think what you said then about just saying right, or just sleep better or just have a bath and, you know, you'll be fine.
Kate Moore Youssef:I.
Kate Moore Youssef:I've heard this as well.
Kate Moore Youssef:I've done some research in my community, about 300 women, and I asked some different questions.
Kate Moore Youssef:And I would say every single woman, the question of hormones and how have they impacted you and how has it shown up?
Kate Moore Youssef:Every single woman had a story.
Kate Moore Youssef:So that's 300 women all saying, I've either had postnatal depression, severe PM's or PMDD, suicidal ideation, anxiety, depression.
Kate Moore Youssef:Towards the end of my period, like anything, not one of them said, I've been absolutely fine.
Kate Moore Youssef:I'm sure, you know, you understand this, is that as women, we've all got off all hormones, it all fluctuates in very different, unique ways.
Kate Moore Youssef:And then with ADHD, we're also fluctuating.
Kate Moore Youssef:And it shows up in very unique ways as well.
Kate Moore Youssef:So to be able to find something that works for both our hormones and both our ADHD is a very kind of very highly sensitized dance, isn't it?
Kate Moore Youssef:Until.
Kate Moore Youssef:And then things change.
Kate Moore Youssef:So something that could work for me at 40, at 50, it might be I might need something totally different, and then we have to bring in all the medication and all of that.
Kate Moore Youssef:So I'm just saying that to validate to anyone that's listening here going, I've still not found that dance that works for me.
Kate Moore Youssef:But at least now with your research and what you're bringing to table, women have got more options.
Kate Moore Youssef:We're able to say, if that doesn't work, let's try this, and if that.
Professor Sandra Coyenne:Doesn'T, you know, yeah, but what you say is true.
Professor Sandra Coyenne:And research recently showed that women with ADHD have earlier menopausal onset.
Professor Sandra Coyenne:And this is completely unknown in the rest of the world, except among researchers now, because it's only one study showing that, and this is a genetic thing.
Professor Sandra Coyenne:So there's a.
Professor Sandra Coyenne:There is something that's in your genes that tells that time has come to stop making eggs and lowering your hormones.
Professor Sandra Coyenne:It's not in your advantage because your bones will lack estrogen for being dense.
Professor Sandra Coyenne:And the fractures that come when you're r 60 are ahead.
Professor Sandra Coyenne:So you must be protected from an early age, earlier than anybody else, and it's not known.
Professor Sandra Coyenne:So that's dangerous for women with ADHD.
Professor Sandra Coyenne:And it means that when you're, for instance, you're 44 and you're having PMDD, severe PMDD in the week before menstruation, your PMDD may increase by advancing during the cycle.
Professor Sandra Coyenne:So first is only the third week, then it starts in the third and then the second, and then it's a whole month.
Professor Sandra Coyenne:And then you think, I'm getting crazy, I can't cope.
Professor Sandra Coyenne:This could be an indication of early menopause in women with PMDD.
Professor Sandra Coyenne:And of course, there's no underpinning for this, but that is logical thinking, because estrogen drops.
Professor Sandra Coyenne:And so you will, earlier and earlier in the cycle, get more depressive symptoms, cognitive complaints, anger outbursts whatsoever.
Professor Sandra Coyenne:So this is a group I worry about, because if you do not start early with HRTA, you may get unresponsive to hormones.
Professor Sandra Coyenne:So the ovaries and the brain are not forever open for hormonal influence.
Professor Sandra Coyenne:It stops after a few years.
Professor Sandra Coyenne:So it's necessary that we learn, it's necessary that women know, but especially the gps who prescribe the hormones.
Professor Sandra Coyenne:And this is a problem because they don't.
Professor Sandra Coyenne:They don't know it, but awareness often comes from patients.
Professor Sandra Coyenne:So I trust you that you will help.
Kate Moore Youssef:Oh, yeah.
Professor Sandra Coyenne:But doctors don't believe women who are on their doorsteps and claim things.
Professor Sandra Coyenne:So we should publish for you and do more research.
Professor Sandra Coyenne:And we do that.
Professor Sandra Coyenne:We will do that.
Kate Moore Youssef:We're grateful.
Kate Moore Youssef:I mean, 100%.
Kate Moore Youssef:I've heard this through so many women that I've spoken to, that their perimenopausal symptoms have started, and they've just questioned it and said, well, I'm too young.
Kate Moore Youssef:And everyone tells me that, you know, before 45, it shouldn't happen, and you get invalidated.
Kate Moore Youssef:And the doctors say you're too young for HRT.
Professor Sandra Coyenne:Yeah.
Professor Sandra Coyenne:We continue to do research on premature ovarian insufficiency.
Professor Sandra Coyenne:So failure of your ovarian.
Professor Sandra Coyenne:Ovarian leading to perimenopause early.
Professor Sandra Coyenne:Of course, it must go with early onset of HRT.
Professor Sandra Coyenne:HRT is important for not only your cognition and mood, but also for the heart.
Professor Sandra Coyenne:And there we come to the story of the female heart during menopause.
Professor Sandra Coyenne:That's at stake, because first cardiac heart attack is the cause of death in women.
Professor Sandra Coyenne:Number one, this is not known.
Professor Sandra Coyenne:People think it's breast cancer, but it's cardiovascular disease.
Professor Sandra Coyenne:We found out in the outpatient clinic of cardiologists here in the Netherlands, with whom I cooperate, and was intrigued by how many ADHD women she saw in her outpatient cardiology clinic.
Professor Sandra Coyenne:And I said, if that's true, we have to screen now immediately, because lives are at stake.
Professor Sandra Coyenne:I'm a bit dramatic sometimes, but it helps to get things done.
Professor Sandra Coyenne:So she did, and she was very committed.
Professor Sandra Coyenne:And Janeka Wittkook is her name, and she is a defender of the female heart that has other problems than male hearts and for recognition of the female heart.
Professor Sandra Coyenne:And we found that in the 300 women that we screened for ADHD, that 35% screened positive.
Professor Sandra Coyenne:So that's a high, high number.
Professor Sandra Coyenne:And it's only screening.
Professor Sandra Coyenne:It's not assessment.
Professor Sandra Coyenne:And for assessment, we need more time.
Professor Sandra Coyenne:But all the women she referred to me for cardiac complaints and ADHD treatment, they did have it, and it's not saying everything, and we have to do Maurice.
Professor Sandra Coyenne:But this was the very reason we also started the H three network in the Netherlands, head, heart and hormones, for the connection between psychiatry, cardiology, and gynaecology.
Professor Sandra Coyenne:Because those women who had heart problems and ADHD were all in perimenopause, and those women with ADHD were younger than the others with these complaints two years younger.
Professor Sandra Coyenne:So that means that the risk comes earlier for women with ADHD.
Professor Sandra Coyenne:And this could very well be explained by early menopause in women with ADHD.
Professor Sandra Coyenne:This has to be combined in another study, but I think we find some directions here.
Professor Sandra Coyenne:And what does this head Heart hormones Network do?
Professor Sandra Coyenne:We educate the public.
Professor Sandra Coyenne:We educate our colleagues.
Professor Sandra Coyenne:We want to form regional little cells of the H three network so that psychiatry, cardiology, and gynecology voluntarily come together and start working together for the sake of women with ADHD and potentially also for other women with psychiatric disorders.
Professor Sandra Coyenne:Because we assume it's not unique for ADHD to have this combination of interactions in the brain, because estrogen protects the heart.
Professor Sandra Coyenne:So it's not a good idea to stop too early with estrogen and progesterone, because it protects the heart, it protects the bones, it protects mental health.
Professor Sandra Coyenne:And, yeah, that's why women with psychiatric problems, including ADHD, suffer more when estrogen drops.
Kate Moore Youssef:Okay, so I just want to move on to Covid or to long Covid, and to.
Kate Moore Youssef:I wanted to give you a little bit of a background about my whole story, because I got Covid when it was before COVID was like a thing.
Kate Moore Youssef:And we'd gone to Italy in February, and I came back from Italy, and I was very, very poorly.
Kate Moore Youssef:And I was in bed with what I thought was just a horrendous flu.
Kate Moore Youssef:And then slowly after that week, I realized I definitely had this coronavirus.
Kate Moore Youssef:So I got it.
Kate Moore Youssef:I was poorly.
Kate Moore Youssef:It took me a good few a month to recover, to feel, you know, better.
Kate Moore Youssef: But this was in: Kate Moore Youssef:My menopausal symptoms came out very quickly after that.
Kate Moore Youssef:And my ADHD symptoms, it all kind of like, it was like a perfect storm, and it felt like it was after Covid.
Kate Moore Youssef:However, on the flip side, I was homeschooling for children.
Kate Moore Youssef:I had a husband who was very stressed with work.
Kate Moore Youssef:I was starting a new business.
Kate Moore Youssef:I had so much pressure going on, worry about parents and everything.
Kate Moore Youssef:But what I did know is that my menopausal symptoms came out much stronger, which is why I then got my ADHD diagnosis.
Kate Moore Youssef:It was sort of all.
Kate Moore Youssef:It's all sort of interconnected.
Kate Moore Youssef:But I wondered what, you know now about long Covid and ADHD and what the connections are and what are you seeing in the latest research?
Professor Sandra Coyenne:Yeah, long Covid is still a mystery for all of us, but we learn a lot, and research is going fast and I hope even faster for the benefit of patients.
Professor Sandra Coyenne:What we see is that people with ADHD have two to three times more often Covid and also long Covid.
Professor Sandra Coyenne:And Covid is basically an immune disorder if you keep having it or that you don't build up any resistance using vaccination or having had an episode of COVID before.
Professor Sandra Coyenne:So the immune system is failing.
Professor Sandra Coyenne:And why is the immune system failing in people with ADhd?
Professor Sandra Coyenne:Well, we know that there are immune disorders in ADHD.
Professor Sandra Coyenne:Other ones such as allergies, such as inflammation in the gut, in the lungs, asthma, cardiovascular system, causing low blood pressure, causing the illness of Renault, causing migraines.
Professor Sandra Coyenne:And this has to do with hypermobility with thin connective tissue.
Professor Sandra Coyenne:Thin connective tissue is a problem because the connective tissue, the skin, the mucous membranes in your mouth, in your gut, in your lungs, are the barrier to bacteria, to viruses, to allergens.
Professor Sandra Coyenne:And if this connective tissue is thin, there might be microscopic small openings that let the bacteria through and the viruses more easily than in other skins.
Professor Sandra Coyenne:And so if you are highly hypermobile, I mean that you can put your thumb to your pills.
Professor Sandra Coyenne:I definitely cannot.
Professor Sandra Coyenne:Orlando.
Professor Sandra Coyenne:Yeah.
Professor Sandra Coyenne:You're better than me.
Professor Sandra Coyenne:Oh, much better.
Professor Sandra Coyenne:And that you can put your hands on the floor with straight legs.
Professor Sandra Coyenne:I can do that easily without exercise.
Professor Sandra Coyenne:I cannot do it.
Professor Sandra Coyenne:You can.
Professor Sandra Coyenne:You might be hypermobile.
Professor Sandra Coyenne:Yeah.
Professor Sandra Coyenne:And that's, that's an advantage when you are gymnastic and you can do better than anybody else.
Professor Sandra Coyenne:But, and many sporters do with ADHD are having hypermobility.
Professor Sandra Coyenne:And they try to reinforce their muscle tone by sporting so much in order to prevent injuries.
Professor Sandra Coyenne:People with hypermobility often have a high number of injuries.
Professor Sandra Coyenne:It's connected to alias don low.
Professor Sandra Coyenne:This is a genetic connective tissue disorder.
Professor Sandra Coyenne:And hypermobility is there in several subtypes.
Professor Sandra Coyenne:But it's connected to allergies and inflammation in the gut, in the lungs, in the brain.
Professor Sandra Coyenne:It's connected to low blood pressure and the tendency to faint when it's hot, when you're frightened, when you're stressed, then you may faint earlier, easier than others.
Professor Sandra Coyenne:This is exactly what Covid does to the brain when it's entering the body.
Professor Sandra Coyenne:It induces inflammation in the cardiovascular system, in your blood vessels, causing hypotension, low blood pressure, fainting.
Professor Sandra Coyenne:You get severe headaches because you're not supplied.
Professor Sandra Coyenne:The blood supply is insufficient.
Professor Sandra Coyenne:It's literally here.
Professor Sandra Coyenne:And you almost faint because you have no oxygen left in the brain.
Professor Sandra Coyenne:Because the blood doesn't reach the brain enough.
Professor Sandra Coyenne:Then you go down to protect your brain.
Professor Sandra Coyenne:Actually, that's why you faint, because the brain cannot suffer loss of oxygen.
Professor Sandra Coyenne:So the blood must stream to the brain, and therefore you go down.
Professor Sandra Coyenne:It's a protective measure of the body.
Professor Sandra Coyenne:So Covid organizes inflammation in the gut, in the lungs, in the brain.
Professor Sandra Coyenne:That's very similar to what people with ADHD with hypermobility already endure.
Professor Sandra Coyenne:That makes me think, but it's only hypothetical.
Professor Sandra Coyenne:I have to warn you, nothing is certain of what I'm saying now that what if ADHD started in people due to a viral infection, after a viral infection in the past, we know there's genetic risk that is there in families.
Professor Sandra Coyenne:But if you also have a risk for immune disorders and such a virus comes along, you are the one who is first attacked.
Professor Sandra Coyenne:And maybe it induces ADT symptoms in the brain, because those Covid symptoms and the symptoms of this mast cell activation syndrome that causes all the inflammation is similar.
Professor Sandra Coyenne:It's restlessness, inattention, impulsivity, anger outbursts, headaches, tiredness, sleep problems.
Professor Sandra Coyenne:So I wondered, what are we looking at?
Professor Sandra Coyenne:Is this the end of psychiatry?
Professor Sandra Coyenne:Because we're not alone.
Professor Sandra Coyenne:We're not alone.
Professor Sandra Coyenne:It's also working for depression and bipolar disorder and schizophrenia, autism.
Professor Sandra Coyenne:But it's also very much, starting now, this research.
Professor Sandra Coyenne:I was thinking, what if we should treat psychiatric disorders with anti inflammatory agents instead of SSRI's, stimulants and melatonin, which I prefer.
Professor Sandra Coyenne:But what if I also read in literature that the medications we use most for ADHD, melatonin, SSRI's and stimulants are all antioxidants.
Professor Sandra Coyenne:They all are anti inflammatory.
Professor Sandra Coyenne:So we already do the right thing in a way, but maybe not most optimal for the body, at least.
Kate Moore Youssef:Yeah.
Kate Moore Youssef:Yeah.
Kate Moore Youssef:Because we now know about the gut brain connection.
Professor Sandra Coyenne:Well, we do know more and more, and the gut and the bacteria also play a role.
Professor Sandra Coyenne:What we eat plays a role.
Professor Sandra Coyenne:Diet may become more important in the next future to influence the gut health and also the brain health.
Professor Sandra Coyenne:So there are so many new things coming.
Professor Sandra Coyenne:But maybe psychiatry will end because.
Professor Sandra Coyenne:Because it might be brain inflammation after all.
Professor Sandra Coyenne:I don't know.
Professor Sandra Coyenne:There is also a brain inflammation group on LinkedIn, a brain inflammation consortium, something like that.
Professor Sandra Coyenne:I followed them, and you could follow them, too.
Professor Sandra Coyenne:And they come up with little pieces of new research and new questions and informing the public about the latest stuff.
Kate Moore Youssef:Yeah, I mean, what you're saying is just beyond fascinating.
Kate Moore Youssef:And so many dots are connecting for me as well.
Kate Moore Youssef:We've had doctor Jessica Eccles on the podcast who talked about hypermobility, and, and she is just amazing, and she's doing such incredible research in this area.
Kate Moore Youssef:And understanding that through the lens of neurodivergence as well.
Kate Moore Youssef:We've had neuroscientists, we've had a.
Kate Moore Youssef:We've had so many different experts, gut brain experts as well.
Kate Moore Youssef:And I think what you just said then, is this the end of psychiatry, basically makes us realize that, like you say, this is not alone, this is not a detached condition.
Kate Moore Youssef:There's so many different interconnecting parts to it.
Kate Moore Youssef:And where we see it show up physically, we see it show up in our gut, inflammation, migraines, in our, you know, in our body with injuries, it's.
Kate Moore Youssef:I think in a way, it's very exciting, but in a way, it makes me feel a bit worried, because how long is it going to take to filter through to the mainstream medical industry?
Kate Moore Youssef:Like, how.
Kate Moore Youssef:How long do we have to wait for doctors to be able to say, oh, yeah, so there's a patient, and she's coming in with migraines and PMDD, and she's also getting injured, you know, when she's doing her exercise, we have.
Professor Sandra Coyenne:To write and teach, and we will do that.
Professor Sandra Coyenne:The whole system is implicated in ADHD.
Professor Sandra Coyenne:It's not just a brain problem.
Professor Sandra Coyenne:It might be the other way around, a physical problem that also has brain manifestations.
Kate Moore Youssef:I wanted to finish on dementia and ADHD in the elderly and to be able to understand what you're seeing now.
Kate Moore Youssef:And you said that this is a very special focus of yours, ADHD and the elderly.
Kate Moore Youssef:What do we need to know?
Professor Sandra Coyenne:Well, the problem is that ADHD is not known among doctors who diagnose dementia.
Professor Sandra Coyenne:And we know from studies that the risk for dementia might be increased as well.
Professor Sandra Coyenne:You have several types of dementia vascular, which might be logical, knowing that the blood vessels are inflamed earlier in life.
Professor Sandra Coyenne:This might lead to cardiovascular disease and also brain problems.
Professor Sandra Coyenne:You have Alzheimer with the plaques that start early in life, and also you only develop dementia when it's far, after a long time, and there are many others, but they are all increased in ADHD, and we do not understand exactly why and what the mechanism is other than that, we suppose that having attention problems your whole life is not good for having no dementia.
Professor Sandra Coyenne:But we don't know the mechanism.
Professor Sandra Coyenne:We don't understand yet.
Professor Sandra Coyenne:But it's very important now that people who get diagnosed for cognitive decline, because they worry about their memory and our attention problems that are increasing with age, they go to such a clinic for cognitive decline and that they are diagnosed for cognitive decline.
Professor Sandra Coyenne:While they may have lifetime ADHD undiagnosed, and the doctors working in those clinics have never heard of ADHD except in childhood.
Professor Sandra Coyenne:They have not been taught about adulthood.
Professor Sandra Coyenne:They don't know that they are looking at possibly a patient with lifetime attention problems who complains about an increase of attention problems.
Professor Sandra Coyenne:Only the patient cannot say, I have ADHD because he was never diagnosed.
Professor Sandra Coyenne:And if he was, he might have forgotten because he never followed up on it.
Professor Sandra Coyenne:It happens a lot.
Professor Sandra Coyenne:People can forget a diagnosis.
Professor Sandra Coyenne:In the states, this is maybe more advanced because they're working with ADT and adults for a longer time.
Professor Sandra Coyenne:But in my country, it's still very new in old age psychiatry and in geriatric.
Professor Sandra Coyenne:Geriatric doctors.
Professor Sandra Coyenne:So I think they're the first.
Professor Sandra Coyenne:Studies should start to disentangle cognitive decline from ADHD, because getting a diagnosis of ADHD means that there is treatment, and getting cognitive decline and or dementia is much worse diagnosis with another perspective, dementia is a deadly condition.
Professor Sandra Coyenne:You know that your life will end in ten years or less, depending on the moment that you get diagnosed.
Professor Sandra Coyenne:So an ADHD can also be treated in older people.
Professor Sandra Coyenne:So that's good news.
Professor Sandra Coyenne:And we did one study in older people based on our patient files, looking at what dosage did they get?
Professor Sandra Coyenne:Did they respond as good as we expect from other adults?
Professor Sandra Coyenne:What about hypertension and cardiovascular disease that they have in a higher frequency because of age?
Professor Sandra Coyenne:And what did we do about it?
Professor Sandra Coyenne:And did everybody follow the protocol?
Professor Sandra Coyenne:And if you monitor well and you measure it and you treat hypertension, and you control with the cardiologist when necessary, it seems to be safe.
Professor Sandra Coyenne:But no RCT yet, no control trial yet.
Professor Sandra Coyenne:So you cannot do everything.
Professor Sandra Coyenne:I hope somebody else will do this.
Professor Sandra Coyenne:It's a lot of work to do this, and I work now on the female ADHD.
Professor Sandra Coyenne:And maybe good to tell that our diva interview, diva five, the diagnostic interview for ADHD in Dutch, is being adapted to the female presentation of ADHD.
Professor Sandra Coyenne:That means that we cannot change the criteria based on DSM five, but we can change the examples of the criteria so that women will more easily recognize themselves because the criteria were made for boys and men and not for women.
Professor Sandra Coyenne:And women have another presentation.
Professor Sandra Coyenne:They have these fluctuations to start with, a cycle.
Professor Sandra Coyenne:They have masking, they have compensations and everything.
Professor Sandra Coyenne:And this should be incorporated so that women get more easier diagnosis.
Professor Sandra Coyenne:I say again, we don't change the criteria.
Professor Sandra Coyenne:This is a bridge too far.
Professor Sandra Coyenne:But we can do change the examples with the criteria based on studies that we're starting now.
Professor Sandra Coyenne:So my PhD student, Noemi Platania, is starting now with that part of research.
Kate Moore Youssef:Okay, where would you like to see all your work that you've been doing and you're still continuing to do.
Kate Moore Youssef:Would you like to see the DSM five change?
Kate Moore Youssef:I mean, how does that even happen?
Kate Moore Youssef:And when is the next time it's reviewed for a change?
Kate Moore Youssef:Because I would say that would be if we're trying to filter down to doctors from all around the world to understand ADHD better, surely.
Kate Moore Youssef:Unfortunately, it comes down to, well, if it's not in the DSM five, then we're not taking it seriously.
Kate Moore Youssef:So how easy is it to get this change in the DSM five?
Professor Sandra Coyenne:Well, the trick is that we developed diva five ourselves.
Professor Sandra Coyenne:So I'm the owner of D five, I'm the editor of the foundation, and it's available in 30 languages.
Professor Sandra Coyenne:So it's basically a worldwide instrument.
Professor Sandra Coyenne:So if we, with all the other ambassadors of the diva five in all countries, it's a whole team over the world, if we agree that it's necessary to adjust the examples to the criteria to the female presentation, and we will do this not alone.
Professor Sandra Coyenne:We will do this based on research.
Professor Sandra Coyenne:We're not adding examples, but we are asking focus group what examples are necessary, both women with ADHD and experts on women with ADHD.
Professor Sandra Coyenne:And we do research on which examples are most probed by women compared to men in the data that we already have from the current diva.
Professor Sandra Coyenne:And then we come with a new diva five that must be translated in all languages.
Professor Sandra Coyenne:I tried to get enough money to do that.
Professor Sandra Coyenne:It will be a step up towards changing the criteria in the future, I hope, but I'm not in the committee.
Professor Sandra Coyenne:It's very hard to change criteria because ADHD is so much under pressure.
Professor Sandra Coyenne:The diagnosis of ADHD has been so much under pressure, and there's so much criticism that the change of criteria leads immediately to increased numbers, and it is a fed diagnosis, and so on and so on.
Professor Sandra Coyenne:You know, the discussion now that women have to diagnose too well, this is not helpful for increasing the number of diagnoses.
Professor Sandra Coyenne:And so people are very critical, especially journalists and the media and some governments, who are afraid of more costs.
Professor Sandra Coyenne:And, well, this is all not helping, but we will continue to do the basics to get this further.
Kate Moore Youssef:But even in just this conversation, you've given us all so many different dots to connect that empowers people to go, ah, okay.
Kate Moore Youssef:And my last point is, a lot of women like me were getting diagnoses because of their children.
Kate Moore Youssef:I actually knew about ADHD in my family a long time before because my two brothers were diagnosed when they were children.
Kate Moore Youssef: The: Kate Moore Youssef:But many, many people are getting diagnoses because they take their child in for, you know, for an assessment.
Kate Moore Youssef:But what they're able to understand, they see it in their children, they see it in themselves, and then they can see it in their parents.
Kate Moore Youssef:And they can look at the parents health conditions like cardiovascular disease, dementia, maybe Parkinson's, maybe early perimenopause, all these different things and go, okay, I don't.
Kate Moore Youssef:I want to break this cycle.
Kate Moore Youssef:I want to have a better outcome for myself.
Kate Moore Youssef:And we're rewriting the next generation story and I think we're only at the beginning.
Kate Moore Youssef:And I just want to say a huge, huge thank you from myself.
Kate Moore Youssef:But I know from so much of my community as well, who I know, you know, get a lot from your research, and I just want to thank you for your dedication for all these years because I can only imagine how exhausting that must have been.
Professor Sandra Coyenne:Well, it was my pleasure.
Professor Sandra Coyenne:I've enjoyed it a lot and it's given me inspiration and empowered myself and it was the best dedication I could choose, I think, in my life.
Kate Moore Youssef:Well, thank you, Professor Sandra Coy.
Kate Moore Youssef:I'm going to make sure that everyone has all the links I've been writing down furiously.
Kate Moore Youssef:I've got all the links of all the different websites and all the amazing projects that you're involved in.
Kate Moore Youssef:I'll put them all in the show notes.
Kate Moore Youssef:But thank you so much for your dedication to ADHD in adults, in women and continuing your curiosity in this subject.
Kate Moore Youssef:And I look forward to reading lots more research and papers from you.
Professor Sandra Coyenne:Thank you so much.
Kate Moore Youssef:If you've enjoyed today's episode, I invite you to check out my brand new subscription podcast called the Toolkit.
Kate Moore Youssef:Now this is where I'm going to be opening up my entire library.
Kate Moore Youssef:My vault of information from over the years, my workshops, webinars and courses.
Kate Moore Youssef:My conversations with experts about hormones, nutrition, lifestyle, and bringing brand new, up to date content from global experts.
Kate Moore Youssef:This is going to be an amazing resource for you, to support you and guide you even more on more niche topics and conversations so you can really thrive and learn to live your best life with ADHD.
Kate Moore Youssef:I'm so excited about this.
Kate Moore Youssef:Please just check out its toolkit on Apple Podcast.
Kate Moore Youssef:You get a free trial.
Kate Moore Youssef:Really hope to see you there.
