ADHD Treatment for Women with Dr. Sandra Kooij
In this episode I am joined by the legendary Dr. Sandra Kooij! Dr. Kooij is a Dutch psychiatrist specializing in ADHD treatment for women. From what she calls “danger week” (the week before your period) to post-partum and (peri)menopause, Dr. Kooij totally gets it, and hearing her talk about her research is fascinating. Dr. Kooij treated women with ADHD for more than 25 years, and for the past 20 years she’s been studying adult ADHD as the head of the Adult ADHD Program of PsyQ in the Netherlands.
Mentioned in this episode
Women, ADHD, and Hormones Webinar - https://www.youtube.com/watch?v=tPerPxb-RNs<…
Prevalence of hormone-related mood disorder symptoms in women with ADHD -https://pubmed.ncbi.nlm.nih.gov/33302160/
PsyQ - https://www.psyq.nl/organisatie/medewerkers…
DIVA Foundation - https://www.divacenter.eu/DIVA.aspx
Summary
In this episode of the Adulting with ADHD podcast, host Sarah interviews Dr. Sandra Kooij, a leading psychiatrist and researcher in the field of adult ADHD, about the impact of hormonal changes on women with ADHD. Dr. Kooij discusses her groundbreaking research, which shows that women with ADHD experience significantly more severe and frequent symptoms during periods of hormonal fluctuation—such as premenstrual, postnatal, and perimenopausal phases—compared to the general population. She explains how estrogen levels interact with dopamine in the brain, and how drops in estrogen can exacerbate ADHD symptoms, leading to mood swings, increased impulsivity, and greater difficulty with focus and emotional regulation.
The conversation highlights the challenges of researching hormones and ADHD due to constantly changing hormone levels and the historical lack of focus on women’s health in medical research. Dr. Kooij shares findings that treatments such as SSRIs and continuous hormonal contraceptives can help manage mood and physical symptoms associated with hormonal changes in women with ADHD. She emphasizes the importance of stabilizing hormone levels throughout the month and advocates for better collaboration between gynecologists and psychiatrists to ensure comprehensive care for women facing these overlapping challenges.
Dr. Kooij also touches on the need for more awareness and research in this area, encouraging women to advocate for themselves and bring scientific studies to their healthcare providers. She shares her ongoing work with the DIVA Foundation and the European Network Adult ADHD to improve diagnosis, research, and support for adults with ADHD worldwide, and stresses that much of her learning has come directly from listening to her patients’ lived experiences.
"If you have enough dopamine, you are more stable. And that's exactly what ADHD people often are not... when estrogen goes down, in women with ADHD in that premenstrual week, for instance, you have twice nothing—your dopamine is low because of ADHD, and estrogen goes down as well, which is a kind of dopamine agonist. Then you have twice nothing. Nothing to cope with mood swings, hyperactivity, impulsivity, chaos, lack of focus and so on."
Topics Covered:
The relationship between hormonal changes (premenstrual, postnatal, perimenopausal) and ADHD symptom severity in women
Estrogen’s role in the brain and its interaction with dopamine in ADHD
Research challenges in studying women’s hormones and ADHD
Treatment strategies: SSRIs, continuous hormonal contraceptives, and potential medication adjustments
The need for coordinated care between gynecologists and psychiatrists
Advocacy for more research and awareness of women’s ADHD
Dr. Kooij’s ongoing work with the DIVA Foundation and European Network Adult ADHD
Transcript
Sarah: Hello Adulting with ADHD fam. Sarah here with an announcement. This summer we're hitting replay on some of our all-time favorite episodes. And as always, if you want to catch them all, visit patreon.com/adultingwithadhd. This is the Adulting with ADHD podcast, self-empowerment for people with ADHD.
This week we have another super amazing episode for you guys. I was able to track down Dr. Sandra Kooij. Some of you are probably familiar, but for those of you who are not, Dr. Kooij has been doing a lot of research in the area of women's hormones and ADHD. And by popular demand, I went and checked out a webinar she gave in October of last year, which I'll link to in the show notes. And talking to her was very, very interesting within the context of hormones and ADHD. Dr. Kooij started as a psychiatrist in 1995 with the development of diagnostic assessment, treatment and research in the field of adult ADHD in the Netherlands. Now she's involved in research, treating patients, training professionals, informing the public, that's us, publishing articles and websites. So yeah, you came highly recommended to me. I was interviewing other subjects and they were talking about the webinar you did with, I believe, ADHD Europe or the EU ADHD network and everyone's just been raving about that and I think that webinar made a huge impact on a lot of people in our community and there's been a lot of excitement around it. So that was really exciting to come across your webinar because I had somehow missed it. And so I went and watched it and I was just blown away and I think the most interesting part I'd like to hear more about is the difficulty there must be in researching this topic. Do you want to speak a little bit about that?
Dr. Sandra Kooij: It's not difficult to listen to women with ADHD when you treat them for 25 years as I did. They tell me all the time that they suffer from premenstrual symptoms that are more severe than usual and that those complaints also seem more frequent. So the first thing I did is, four years ago, I went to a conference for women with ADHD. I was a speaker there and I could ask questions to the audience. So I made a survey that very afternoon asking them about premenstrual complaints, postnatal complaints and climacteric symptoms, mood symptoms, anxiety. But of course it's also mixed with ADHD itself. You cannot distinguish it very well because it's all a mix. But we used validated questionnaires made adjusted for self-report. And so I had in one day 200 questionnaires filled in by women with ADHD. And we repeated that same study in my department in the Netherlands at SiQ in the Hague where I work now for 20 years. We had around 200 women with ADHD and we compared the prevalences of the complaints in those three episodes with hormonal changes to the general population studies that were published already using the same questionnaires.
Sarah: Okay.
Dr. Kooij: So we didn't have a real control group, which would be more elegant, but we had the prevalence rates in the population among women in general in our country. And what we found was confirmation of the hypothesis that there's something going on regarding hormonal mood changes and probably also ADHD severity increases premenstrually, postnatally and during the perimenopause. The frequency of the symptoms was two to three times increased in all episodes. And the severity was also increased. So this is a clear indication that it's right what women tell me and that there's really a difference between women in general who may suffer from similar complaints, but they are more severe and they're more frequent. Postnatal depression for instance had happened at least once in 60% of women. This is really deviant. That means that if you go to a clinic for postnatal depression, you may find a lot of ADHD if you ever knew it was there, if you would screen for it. And it might very well be untreated ADHD of women not being aware of the condition, not being treated. So this is a new era of research. Same is true for perimenopausal complaints that are fairly common, but often neglected in general, but in women with ADHD, it's definitely more severe. So many women in their perimenopausal life phase, they come for the first time for assessment of ADHD.
Sarah: Yeah.
Dr. Kooij: Because they have suffered, of course, always from ADHD symptoms from childhood on, but they were able to cope one way or the other because they were intelligent, because they had supportive environment. But when the hormones are really going down, and this is for a long time—the premenstrual period is only one week. The postnatal period is a few months. But perimenopausal period is 10 years.
Sarah: Oh jeez.
Dr. Kooij: So this is really a long time and then people cannot cope anymore and they don't have an escape.
Sarah: Right.
Dr. Kooij: Nobody understands. So when we found these results, I was more intrigued about what's behind this. Of course, the common ground of all three episodes is a change in hormones, especially estrogen, which is disturbed or disregulated, it's going down anyway. And I studied the literature to check what estrogen does on the brain. And estrogen proves to be very similar to dopamine. And dopamine is a neurotransmitter in the brain that's involved in ADHD. It helps us to focus, to have overview, to have peace of mind, to feel happiness and reward and to be focused. And to be able to control anger and other emotions. So if you have enough dopamine, you're more stable. And that's exactly what ADHD people often are not, they're not stable. They're moody, they're hyperactive, impulsive, inattentive, chaotic, and their mood changes all the time every day. But when estrogen goes down in women with ADHD in that premenstrual week for instance...
Sarah: Yeah.
Dr. Kooij: ...you have twice nothing. So your dopamine is low because of ADHD, we assume. We cannot measure it, but we assume it's a hypodopaminergic condition. And estrogen goes down as well, which is a kind of dopamine agonist. It works as a reinforcer of dopamine. Then you have twice nothing. Nothing to cope with mood swings, hyperactivity, impulsivity, chaos, lack of focus and so on. And well, we are all aware that premenstrual episode is characterized by depression as well.
Sarah: Yeah.
Dr. Kooij: Severe depression even, including suicidality every month.
Sarah: Wow.
Dr. Kooij: That goes away after a week, luckily. But it's severe to have this every month on a regular basis. And because it's going away when the estrogen level rises in the first week of the cycle, this is normal, then the mood improves and your focus and your control improves as well because estrogen does what dopamine also should do.
Sarah: Right.
Dr. Kooij: So this is very intriguing. My aim was to study hormone levels, ADHD symptoms and mood symptoms in a cycle. But I wrote this proposal for a study and it was never, I never got it through the medical ethical committee for some reason I don't understand.
Sarah: Yes.
Dr. Kooij: And so I didn't get the money to do it. And in general, it's hard to study hormones because they change all the time.
Sarah: Yeah.
Dr. Kooij: And that's one of the reasons that women haven't been studied in general in medicine as much as they should. Because they're less reliable subjects compared to men who have no mood changes or hormonal changes all the time.
Sarah: Mhm.
Dr. Kooij: So that's one of the reasons in medicine in general that men have been more studied than women, which is a shame after all because women are different and have their own issues, especially hormonal issues.
Sarah: Absolutely.
Dr. Kooij: So there is too little known in fact about the female body, the female hormonal change, the impact on cognition, memory, mood, and so on. But what we however do know, not from studies in ADHD women, but in general, women in the general population is that women who suffer from PMDD, premenstrual dysphoric disorder, which is the depressive form of premenstrual syndrome. Premenstrual syndrome is the lighter version of PMDD.
Sarah: Mhm.
Dr. Kooij: PMDD, there's really depression during one week. The level of the mood is lower. This is well treated. Proven effective treatment is an antidepressant. And this is called an SSRI, serotonergic reuptake inhibitor. There are several of them. And they have been studied already 20 years ago, I think, in women in general to treat them the last two weeks of the cycle with this SSRI and these studies have shown that the symptoms of PMDD improve or go away. I have done it often with women with ADHD as well.
Sarah: Yes.
Dr. Kooij: And I learned that they often then tell me, I'm now better the second half of the cycle as compared to the first half.
Sarah: [laughing]
Dr. Kooij: And that's from this experience I learned that it might be better to treat them the whole month and not let them have to think about what day of the cycle is and should I start, should I stop. It's all too complicated and the added value isn't there as when the second half is better than the first half when there is not this antidepressant. So people experienced an improved mood. And it's special because antidepressants usually work only after four weeks...
Sarah: That's what I was wondering, yeah.
Dr. Kooij: Yeah, but in this fluctuating hormonal mood changes it works faster.
Sarah: Interesting.
Dr. Kooij: So it works from the third week and the fourth week it works. But when you experience that your mood is better in the second half the cycle as compared to the first, you better take it all the whole month.
Sarah: Right.
Dr. Kooij: Because PMDD is related to depression. It is a mood disorder. But it only comes with when the estrogen drops. And as such some people can cope and others really suffer every month and they should have this treatment, I think.
Sarah: Correct. Yeah. I have a question. How do you approach this with your practitioner? I find that it's not very known. At least among the people I've talked with here in the US, it doesn't—either there's not a lot known about it or doctors aren't really receptive to hearing about it. Do you have any advice for that?
Dr. Kooij: Well, people don't feel very certain about the knowledge.
Sarah: Mhm.
Dr. Kooij: Although it's out there for 20 years. What I'm telling you now about the SSRIs, the same is true for hormonal suppletion or an oral anti-conceptive treatment, which is hormone treatment.
Sarah: Right.
Dr. Kooij: And this works very well as long as you don't stop in the third week.
Sarah: Right.
Dr. Kooij: Then you induce again an estrogen drop and then you get the symptoms back. So that's not helpful. You should treat yourself four weeks all the time. And there's no medical reason why you shouldn't because you're not really having a menstruation after all. It's just a withdrawal bleeding and it's just for your own experience that you kind of have a period, which is not a real period because you have not a real hormonal cycle. It's suppressed by the hormones. So the trick is that the hormones should be stabilized the whole month. And the pill with estrogen and progesterone can do that. But you shouldn't have the stop week. There are two ways to treat PMDD. The pill or the oral anti-conceptives are better for people with a lot of physical symptoms such as bloating, feeling having tender breasts, feeling a bit—I don't know what.
Sarah: Yeah, the bloating, absolutely. Yeah.
Dr. Kooij: So the physical symptoms are best treated with hormones and the mood symptoms may be better treated with an SSRI.
Sarah: Hi there, it's Sarah again. Hope you are enjoying the replay. I'm thrilled to announce a new tier for the show, Friends of the Show. This exclusive Patreon tier offers some sweet perks for those who want to show extra support and also get their name out there. To get started, visit patreon.com/adultingwithadhd. Please note that some restrictions apply.
Dr. Kooij: So this is knowledge from women in general. Studies in women in general. But they work very well in ADHD as well.
Sarah: Okay.
Dr. Kooij: So it depends on whether you can use hormones after all, you should discuss it with a GP in your case with your history, your family history regarding cancer and so on and so on. So you should make a decision based on good advice from the doctor. But there are two ways to go and that's at least better than one.
Sarah: Yeah, absolutely. So if I wanted to, I could take this 20 years of research to my doctor maybe, is that a solution?
Dr. Kooij: We published a paper using the questionnaires in women, 200 women with ADHD compared to data from the general population.
Sarah: Okay.
Dr. Kooij: It's published under the name of Dorani.
Sarah: Okay.
Dr. Kooij: D-o-r-a-n-i, Dorani. It was published last year, 2020.
Sarah: Okay.
Dr. Kooij: So this is something that you can show that there is some data now. We are among the first.
Sarah: Mhm.
Dr. Kooij: There are many, many more people who have the same hypothesis as I have because they also study the literature and they found that estrogen is in fact a neurotransmitter. Working in the same way in the brain as dopamine and noradrenaline and serotonin and other stuff. So there's not a strict division between hormones, the immune system and neurotransmission.
Sarah: Wow.
Dr. Kooij: All those compounds talk to each other in the brain. There's no communication lack. It's wonderful.
Sarah: Wow. That and for you guys listening, I'm going to link this study in the show notes so that you guys can access it because that sounds like something really helpful to...
Dr. Kooij: I hope so. I hope so. This is the aim of the whole study that we find out better solutions for women with ADHD, of course.
Sarah: Yeah, absolutely. So when you mentioned your questionnaire, you're always looking for more people, right? To fill out questionnaires? Is that something you're looking for?
Dr. Kooij: No, not at the moment, sorry.
Sarah: Fine. No, okay. I heard something on the webinar about maybe you had a questionnaire but that must have been like a separate thing. So.
Dr. Kooij: No, no, no. I did have this questionnaire, but we studied two samples already of 200 women.
Sarah: Oh, okay.
Dr. Kooij: One at the ADHD Women Conference in this one afternoon when 200 women filled in and one in my department with diagnosed women with ADHD that were in treatment with us. And those results were very similar.
Sarah: Gotcha.
Dr. Kooij: So I do believe those data now.
Sarah: Got it. It's qualified.
Dr. Kooij: I begin to believe them and the next step would be to measure objectively ADHD severity in the last week of the cycle and mood severity. So we are currently trying to do that.
Sarah: Yes, tell me about that.
Dr. Kooij: But this is not a questionnaire study as such. This is a study using the QB test. Maybe you've heard of it? No? QB quantitative behavior test.
Sarah: Okay, yeah.
Dr. Kooij: It's a computer test that measures objectively ADHD symptoms. So it measures your movements using an infrared camera. It measures inattention and impulsivity and this is compared to a database of normed controls of the same age and gender. And this is a test that we use in clinical practice a lot to study the effects of medication.
Sarah: Mhm.
Dr. Kooij: You want to see a decrease of severity using medication of course and when it's not there, there might be a non-response or something. But you can also use this severity to show an increase during the cycle in women with ADHD.
Sarah: Interesting. Wow.
Dr. Kooij: Yeah.
Sarah: Wow.
Dr. Kooij: So I try to do stuff without money now.
Sarah: I was about to ask. This is a very creative solution here that you've come up with. So you have to be creative because of the lack of funding basically.
Dr. Kooij: You have to be. As a researcher when you're not creative, you can forget about it.
Sarah: Right.
Dr. Kooij: Yeah.
Sarah: Well, the reason I was asking about the questionnaire is I was curious if there's any way we could support you or your efforts. If there's any—you have a website or something where we can amplify your message and the work you're doing and get the word out more.
Dr. Kooij: Yeah. Well, let's keep in contact, I would say because at this very moment I don't immediately have something that I need your help with, but it might happen in the near future.
Sarah: Okay.
Dr. Kooij: And this would be great. So let's keep in touch.
Sarah: Absolutely. And my listeners I can tell you right now they're chomping at the bit to help this cause. So I'm sure whatever you need, I'm sure we'll be able to help you out. Well, maybe not anything, but you know, data, we're here.
Dr. Kooij: I can imagine because those answers are urgently needed. Science is a bit behind when it comes to women in general and especially when it comes to women with ADHD.
Sarah: Yeah.
Dr. Kooij: Unfortunately. But something has to be done.
Sarah: Yeah.
Dr. Kooij: And I hope I won't be the only one looking into this corner because there's a lot to find, I think. It's also important to understand that you can treat postnatal depression and perimenopausal severity of mood symptoms and ADHD severity, you can treat the same way. So again an SSRI for depression and/or oral contraceptives or hormone suppletion and the oral contraceptives should not have a stop week. That's important.
Sarah: The no stop week is the message I'm getting is just keep taking it all the way around.
Dr. Kooij: Yeah...
Sarah: It sounds like a lot of it is getting your gynecologist in sync with your psychiatrist and making sure they're working together it sounds like. At least here in the US, I mean they're disjointed so I feel like the hand's not talking to the foot. It's like all these different people you kind of have to update at the same time and get them working together.
Dr. Kooij: That's where medical research is meant to be.
Sarah: Okay. So I got to get that study and print it out and just take it everywhere I go.
Dr. Kooij: Well yes, sometimes the people themselves are the best promoters, ambassadors of the message because it's for your benefit to have the word out. And it can be very powerful. Oh, I have to share something else. Some patients of mine tell me another—a third route to treat the symptoms and that is a temporarily increase of the ADHD medication.
Sarah: Yes, I have heard that before.
Dr. Kooij: And I must warn you that it has not been studied and I don't know whether that's a good idea or not and neither do I know whether it's a good idea for everybody.
Sarah: Okay.
Dr. Kooij: But it makes sense based on the hypothesis that estrogen and dopamine interact and enhance each other. So if you increase estrogen using a pill, you could as well increase dopamine using the ADHD medications.
Sarah: That's right because they're the same type of messengers and so they have a similar impact on the brain.
Dr. Kooij: That's really interesting. I haven't heard it worded that way before. So it just—something just clicked in my brain while I'm talking to you because I haven't heard a lot of people describe it in that way before, but they have a similar impact on the brain and I'm just thinking out loud at this point. Just be—my medicine wore off about an hour ago.
Dr. Kooij: It's all fine, no problem.
Sarah: Yeah, so let's close out and tell people where they can find you and stay in touch with you and stay on top of what you're doing these days. Is there a good website that they can go to?
Dr. Kooij: Not yet on this topic, I must say. I'm the founder of the Diva Foundation, which is nice for women to hear—the Diva Foundation.
Sarah: Yes.
Dr. Kooij: But it's the diagnostic interview for ADHD in adults that we translated now in 22 languages.
Sarah: Okay.
Dr. Kooij: And it's called Diva 5 because it's based on DSM 5 criteria for ADHD.
Sarah: Okay.
Dr. Kooij: So it's now in Japan, in Russia, in China almost. We're going to India.
Sarah: Wonderful.
Dr. Kooij: It's amazing. So it's really a worldwide instrument now. And this is a website that I have. I'm also the founder of the European Network Adult ADHD.
Sarah: Okay.
Dr. Kooij: That brings together professionals in Europe to help and support each other to increase awareness, to do research, to organize education and so on. Well, I started the department in the Netherlands for adult ADHD. I'm teaching every day, I would say.
Sarah: [laughing]
Dr. Kooij: And I'm doing research, seeing complicated patient, complex patients and advising my colleagues because I've 25 years of experience by now. And then you have to share your knowledge. It's about time. But I've done this always. So I love it and I will continue to be curious and to study and try to answer the questions of patients because I have learned most from my patients, not from the books because when I started, the books were just starting to be written. And ADHD in adults was almost not existing. So I had to learn from those who told me about their life and their symptoms and it's very rewarding.
Sarah: Well, thank you very much for the work that you do for us. We're very excited about it and I'm going to put links in the show notes for the listeners and we will just stay in touch then it sounds like.
Dr. Kooij: Wonderful. Wonderful to meet you, Sandra. Thank you for being here.
Dr. Kooij: Thanks for your attention and we keep in touch.
Sarah: Absolutely. I'll talk to you soon.
