On this week’s episode (by popular demand!) is Dr. Sandra Kooij, a Dutch psychiatrist researching the relationship between hormones and ADHD. Dr. Kooij’s October webinar with ADHD Europe on the topic did not disappoint, and we talk about her life’s work in this can’t-miss episode.
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. Jooij 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/-/wcl/kYuUJvTfljZd/1302791/sandra-kooij
DIVA Foundation – https://www.divacenter.eu/DIVA.aspx
About The Adulting With ADHD Podcast
It’s not just you – we aren’t talking enough about ADHD and hormones. There are so many things I wish I had known about hormones and ADHD earlier. They play such a fundamental role in the human body, deeply impacting a person’s life at all of their life stages.
As a former journalist and current ADHD’er, I unpack this topic through patient stories, expert interviews and personal narrative. With new episodes biweekly on Wednesdays, The Adulting With ADHD Podcast covers a variety of ADHD hormone topics including puberty, menopause, perimenopause, PMS, PMDD, and more.
Why aren’t we talking about this more? What do you do if you find yourself struggling with ADHD and hormones? We discuss this and much more. Need basic info about ADHD and hormones? Get the free quick guide at https://adultingwithadhd.com/hormones.
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You came highly recommended to me I was interviewing other subjects and and they were talking about the webinar you did with I believe ADHD Europe or the EU ADHD network and 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 it was just, I was just blown away. And I think the most interesting part I'd like to hear more about is the difficulty it, there must be in researching this topic. Do you want to speak a little bit about that?
Dr. Kooij 01:00
Sure. Yeah. Well, it's not difficult to listen to women with ADHD, when you treat them for 25 years as I did, and they tell me all the time that they suffer from premenstrual symptoms that are more severe than usual. And that is, those complaints also seem more frequent. So the first thing I did is four years ago, I went to a conference of four women with ADHD. I was a speaker there, and I was, 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 use the validated questionnaires, made adjustments 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 in at psikyo, in The Hague, where I work now for 20 years. And 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. Okay. Now, 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 or something going on regarding hormonal changes, and probably also ADHD severity increases prematurely postnatally and during perimenopause and 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 that it's right what what women tell me 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. And postnatal depression, for instance, was a was had happened at least once in 60%. Women, it is really different. 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 area of research. Same is true for 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 fees, they come for the first time for assessment of ADHD because they have suffered like, of course for always from ADHD symptoms from childhood on but they were able to call one way or the other because they were intelligent, because supportive environment. But when the hormones are really going down, and this is this is for a long time it's listen to the pre menstrual period is only one week. the postnatal period is a few months but perimenopausal period is 10 years so this is really long time and then people cannot cope anymore and they don't have an escape or nobody understands so when we found these results we i was more intrigued about what's behind this of course the common the common ground of all three episodes is a change in hormones especially estrogen which is disturbed or dysregulated is going down anyway and i die i i studied 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 pre menstrual week for instance you have twice nothing so your dopamine is low because of adhd we assume we cannot measure it but we assume it's a hyper dopaminergic 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 with hyperactivity impulsivity the chaos lack of focus and and so on and while we are all aware that premature episode is characterized by depression as well severe depression even including suicidality every month that goes away after a week locally but it's severe to have this every month on a on a regular basis and because it's gone 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 for dopamine also should so this is very intriguing and 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 yes and so i didn't get the money to do it and in general it's it's hard to study hormones because they change all the time and that's one of the reasons yet hormonal 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 more changes or hormonal changes all the time so that's one of the reasons in in medicine in general that men i've been more studied than women which is a shame after all because women are different and have their own issues especially hormonal issues though there is little to 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 is the lighter version of pmdd pmdd is really depression during one week the level of of the mood is lower and this is well treated proven effective treatment is an anti depressant and this is called an ssri serotonergic uptake 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 this these studies have shown that the symptoms of pmdd improve, or go away. I have done it often with women with ADHD as well. 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. And this, from this, from this experience, I learned that it might be better to treat them two whole months. And not letting them have to think about what day of the cycle is. And should I start, should I stop? It's all too complicated. And it's it's the added value is, is isn't there as when the second half is better than the first half, when there is not this antidepressants, so people improved experience and improved mood. And especially because antidepressants usually work only after four weeks.
Dr. Kooij 11:01
yeah. But in this fluctuating hormonal mood changes. It's it works faster. Interesting. So it works. It works in from the seconds 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 is compared to the first you better take it over the whole month. Because pmdd is related to depression. It is a mood disorder. But it's 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,
correct? Yeah. I have a question. How do you approach this with your practitioner, I find that it's not very known, at least, at least among the people I've talked with. Here in the US, it doesn't either, either. There's not a lot known about it, or doctors aren't really receptive to hearing about it. Yeah,
Dr. Kooij 12:10
that maybe, well, people don't feel very certain about the knowledge. Although it's out there for 20 years, what I'm telling you now about SSRIs is same is true for hormonal circulation, or an oral anti conservative treatment, which is hormone treatment. And this, this works very well, as long as you don't stop in the third week. Right? Then you induce again, estrogen drop, and then you get the symptoms back. So that's not helpful. You should do it yourself for weeks, all the time. And there's no medical reason why you shouldn't, because you're not really having an menstruation After all, it's just a withdrawal, bleeding. And it's just for your own experience that you can't 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 all months. And a pill with estrogen and progesterone can do that. But you shouldn't have to stop weak. Yes. So there are two ways to treat pmdd. The pill or the oral anti conservatives are better for people with a lot of physical symptoms such as bloating. Feeling 10 having tender breasts, feeling a bit? I don't know what the bloating? Absolutely, yeah. So this the physical symptoms are best treated with hormones. And the mood centers maybe better treats business, right. Okay. So this is knowledge from women in general studies in women in general, but it worked very well in ADHD as well. Okay. So it depends on whether you can use hormones after all, you should discuss it with the GP, in your, 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. Yeah, absolutely.
If I wanted to I could take this this 20 years of research to my doctor, maybe is that a solution?
Dr. Kooij 14:43
Well, we published the paper using the questionnaires in women 200 women with ADHD compared to the data from the general population. It's published under the name of Durrani. DRA ni Durrani it was published last year 2020. Okay, so this is something that you can show that that it that there is some data now that we are among the first. 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 it's there's not a strict division between hormones, immune, immune system, and neurotransmission. Wow, ever, all those compounds talk to each other in the brain. There's no communication lag. It's, it's wonderful.
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
Dr. Kooij 16:00
to ally. Oh, no, I hope so. This is the aim of those study that we find out better solutions for women with ADHD Of course. Yeah,
absolutely. Um, so when you mentioned your questionnaire, you're you're always looking for more people right to fill out questionnaires? Is that something you're looking for?
Dr. Kooij 16:19
No, not not at the moment. Sorry.
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 16:30
no, no, no, I did have this questionnaire. But we studied two samples already of 200 women. Okay. One at the ADT women conference, in is one afternoon, over 200 women filled in. And one in my department was diagnosed women with ADHD that were in treatment with us. And those results were very similar. Gotcha. So so I do believe those states are now qualified to believe them. And the next step, the next step would be to measure objectively, ADHD severity in the last week of the cycle, and mood severity. So we're currently trying to do that. Yes. Tell me about but this is not a questionnaire study as such, this is, this is a study using the QB test. Maybe you've heard of it. Now. You'd be QB. Quantitative behavior test. Okay. Yeah, it's a, 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, 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.
Dr. Kooij 18:12
Yeah. So I tried to do stuff without money. Now,
I was about to ask this is a very creative because of the lack of funding.
Dr. Kooij 18:29
You have to be as a researcher, when you're not creative, you can forget about it.
Right? Yeah. Well, the reason I was asking about the questionnaire is I was curious if there was 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 18:52
Yeah. Well, well, let's, let's keep in contact, I would say because at this very moment, I don't immediately have something that that I need your help with, but it might, it might happen in the near future. And this will be great. So let's keep in touch.
Absolutely. And my listeners all I can tell you right now, they're, 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 if you ever need
Dr. Kooij 19:29
that's how large your your group of women with ADHD that follow your work.
So consistently on the website, I mean, sorry, on the podcast, consistently, we're getting about 1000 women per episode and I published, I assume as the same women so I would say a little over 1000 twice. And then I have different audiences on social media and the website and those More in the 3000s. And for 1000s per platform, and it's hard to know where the overlap is because some of them probably listened to they listen that are also. So there's a lot of overlap, but there's at least 1000 that every week, they're coming back and listening to these episodes. And so yeah, I know, I know, there's at least 1000 of them who are really tuned in, and they'll even write in like, they're like really paying attention to this stuff. They're very engaging, and you know, they mentioned, yeah,
Dr. Kooij 20:33
I can imagine because dose answers are urgently needed. And science is a bit behind when it comes to women in general, and especially when it comes to women's ADHD. Yeah, unfortunately, but something has to be done. And I hope I hope I won't be the only one looking into this corner. Because there's, there's a lot to find, I think. And yeah, 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 secretion. And oral contraceptives should not have a stop week. That's important.
No stock week is the message I'm getting is just keep taking it all the way around. Yeah. Okay. And it sounds like a lot of it is getting your your gynecologist in sync with your psychiatrist and making sure they're working together. It sounds like yeah, at least here in the US. I mean, they're just jointed. So I feel like the hands not talking to the foot. It's like, all these different people, you kind of have to update at the same time. And
Dr. Kooij 22:03
yeah, together, that's where medical research is meant to be.
Get that study and print it out and just take it everywhere I
Dr. Kooij 22:14
go. Well, yes. Sometimes the people themselves are the the best promoters ambassadors of the message. Because it's, it's in your, that it's for your benefit, to have the word out. And it's it can be very powerful. Yeah, I have to share something else. Some patients of mine Tell me another third root to treat symptoms, and that is a temporarily increase of the ADHD medication.
Yes, I have heard that before.
Dr. Kooij 22:50
And I must, I must warn you that it has not been studied. Okay. And I don't know whether that's a good idea or not. And I don't need to do I know whether it's a good idea for everybody. 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, the pill, you could as well increase dopamine using the ADHD medications.
That's right, because they're the same type of messengers. And so
Dr. Kooij 23:23
they have a similar similar impact on the brain.
Right? That's a good Yeah. That's really interesting. It I haven't heard word of that way before. So it just something just clicked in my brain while I'm talking to you, because that I haven't heard a lot of people describe it in that way before, but they have a similar impact on the brains. And they're just thinking out loud at this point. Just be my medicine wore off about an hour ago.
Dr. Kooij 23:53
It's all fine. No problem.
Oh, well, that is wonderful. You You managed to answer the questions that I had on my list. Even though you didn't know what I was going to ask, I had a list here and you pretty much address them. I'm going to pull them up and just double check, and make sure but you pretty much answered all the questions I was going to ask you anyway. You got into this field of study because you were psychiatrists. And you were getting a lot of patients who were bringing up the issues of the hormonal stuff, and then you test it out your hypothesis. Yeah, so um, what let's close out and tell people where they can find you and stay in touch with you and and stay on top of what you're doing these days. Is there a good website that they can go to?
Dr. Kooij 24:53
Not yet on this topic, I must say. I'm the founder of the Defense Fund. Foundation, which is nice for women to hear the diva Foundation, yes. But it's the diagnostic interview for ADHD in adults that we translated now in 22 languages. Okay. And it's called diva five because it's based on DSM five criteria for ADHD. So it's now in Japan, in Russia, in China, almost, we're going to India. It's, it's amazing. So it's really a worldwide instrument now. And this is a website that that I have. I'm also the founder of the European network, adult ADHD, okay, this brings together professionals in Europe to help us support each other to increase awareness to do research, to organize education, and so on. And well, I started the department in the Netherlands for adult HD, I'm teaching everyday I would say. And I'm doing research and seeing complicated patient complex patients and advising my colleagues, because I 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 of 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 our life and our symptoms, and it's, it's, it's very rewarding.
Well, thank you so much for the work that you do for us. We're very excited about it. And I'm gonna have links in the show notes for the listeners and we will just stay in touch then it sounds like Oh,
wonderful. Wonderful to meet you,
Sandra. Thank you for being here. And thanks for your attention and
Dr. Kooij 27:09
we keep in touch.
Absolutely. I'll talk to you soon. Okay, thank
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