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Hyperfocus with Rae Jacobson

Head, heart, hormones: Why women’s ADHD care should treat the whole person

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Earlier this year, Hyperfocus took a field trip to San Diego for an ADHD conference called APSARD, which stands for the American Professional Society of ADHD and Related Disorders (quite a mouthful).

A conference of ADHD professionals might not sound fascinating, but it was — and we learned a ton. But there was one person and one talk I really wanted to find: A keynote speech about how ADHD affects women’s bodies by Dr. Sandra Kooij. 

What Sandra is doing is something so sensible and radical: Looking at ADHD as a whole-body issue. Digging into how it can affect women’s hormones, our health, and especially our hearts. 

I find Sandra’s research fascinating and was thrilled when she agreed to sit down for a conversation with me. We didn’t waste any time and quickly set up a makeshift studio for this week’s episode of Hyperfocus. 

Also, a quick note on the audio this week: We had to record this episode outside the conference hotel, on a bustling patio full of ADHD professionals and some noisy birds. So, please forgive the extraneous sounds. 

We love hearing from our listeners. Email us at hyperfocus@understood.org.

(4:07) Swedish registry study data on diseases in people with ADHD

(7:06) ADHD and hormones 

(13:56) Cardiovascular disease in women

(20:21) Talking to your doctor about diseases related to ADHD

Rae: We so often think of ADHD as a condition of the brain. You know, it affects organization and focus and these sort of more cerebral things. But it sounds like you're saying it affects so much more than that.

Sandra: Yeah. I would say ADHD is not only a psychological or psychiatric or neurodevelopmental problem. It's a systemic disease. And people don't like the word disease, I know. They don't even like the word disorder. They talk about neurodiversity all the time. But I go back to disease, you know why? Because the whole system is implicated. And if we don't acknowledge that it's a physical problem as well...

Rae: Yeah.

Sandra: We never will have the right treatment for people with ADHD. They agree.

Rae: They agree. They're clearly in chorus about it.

Sandra: Yeah. Yeah.

Rae: OK. So, you might be wondering, "Why am I hearing birds on this podcast?" Or if you're watching this on YouTube, "What's with the beautiful ocean background?" Well, it's because "Hyperfocus" got to take a little field trip earlier this year to San Diego. And despite the sunny setting of this week's interview, we weren't in California to go to the beach. I wish. Instead, we were there for an ADHD conference called APSARD. It's put on every year by the American Professional Society of ADHD and Related Disorders.

This field loves an acronym, and it brings together all kinds of ADHD and mental health care experts. We met doctors, researchers, therapists, pharmaceutical sales reps, truly all kinds of people in the ADHD field. And one of the people we were most excited to meet is the woman you just heard from, Dr. Sandra Kooij. She came all the way to San Diego from her home in the Netherlands to give a keynote address at the conference.

She's a psychiatrist and researcher who wears a ton of hats back home. She's a professor who lectures on adult ADHD at the Amsterdam University Medical Center and a co-founder of an educational program called the ADHD Power Bank. She's also one of the founders of the Head Heart Hormones Foundation, which was established to study how ADHD intersects with women's hormones and heart health.

To understand ADHD and the way that Sandra does, you need to see it as an issue that affects the entire body. An idea that if you take a step back, makes a lot of sense, but that is a foundation for research and hopefully changes in how we view and treat ADHD as a disorder is quietly revolutionary and something that has the potential to help millions of people with ADHD.

Because what Sandra and her colleagues are seeing is that especially for women, ADHD does not exist in a vacuum. It interacts with our hormones, changes as we age, and thanks to researchers like Sandra, we're starting to learn more about how it affects our physiology too, especially, and let me tell you, somewhat frighteningly, our hearts.

I wanted to know more, and Sandra, brilliant, poised, ingenious that she is agreed to sit down with me under the seagulls and explain This week on "Hyperfocus" an al fresco conversation with Dr. Sandra Kooij.

Sandra: So, why do I say that? ADHD as a systemic problem means that no evidence shows that in ADHD there are so many physical disorders. That is really overwhelming, and I when I heard about it for the first time, I was so shocked that I couldn't believe it. And I was a bit frightened. How can we deal with it? How can we solve those problems? Because there are so many. And I'm not talking about a Swedish registry study. A Swedish registry study is a study of the whole population, almost the whole population of Sweden, and they have data on the whole population in the GP office.

[All GPs are obliged to code every disorder in every patient, so they are so well informed. And because they're not selecting anybody, it's a real picture of the general population. So, they are quite authoritative with all their outcomes.

And they found, they studied physical diseases and disorders in ADHD, and they found that ADHD people has 34, 35 investigated diseases more often than others.

Rae: Why?

Sandra: Good question. Ten points. Of course, this is the important question: How come?

Rae: Yeah.

Sandra: How is it possible that ADHD suffers from all disorders that you can imagine, including diabetes type 2 related to obesity? OK. I am not surprised. But also diabetes one. That's an immunological disease and starts early and has nothing to do with obesity. Cardiovascular disease: OK, I can understand that lifestyle, smoking, alcohol, drugs that sleep, that lifestyle, obesity. But the numbers are 38% has cardiovascular disease in ADHD versus 23 in controls in the population. So, it's 15% more.

Rae: Is it significant?

Sandra: It's highly significant. It's frightening.

Rae: Yeah. It is frightening. I mean, as a person with ADHD who has a heart in my body.

Sandra: Everybody has a heart. Otherwise, you won't have a healthy life. That's the problem is, how healthy is your heart and how can we improve its health so that you have a good life. And, well, then there's a lot of immunological issues, varying from arthritis to allergies to a hypermobile tissue, connective tissue, to pain due to hypermobility and accidents and injuries. We're talking about asthma. We're talking about migraine. Talking about airflow colitis dystocia, and hernia, back hernia, which is weak connective tissue not being able to keep stuff in its place and so on and so on and so on. And we are talking about early menopause is associated with female ADHD.

Rae: Why is that?

Sandra: Nobody tells you. When you find, when you find a connection nobody is explaining why. So, we have to find out. And we still don't know.

Rae: And that's what you're studying now. You see that it affects ADHD, and ADHD affects you with the disorders, but the why is what the research is about?

Sandra: Yes of course.

Rae: OK.

Sandra: Because if we understand why this, all this, this whole bunch of diseases and disorders is associated with ADHD, there must be a reason or explanation. And so, we have to find out which is the underlying cause.

Rae: Yeah.

Sandra: Maybe not for everything, but for part of it. Because if we don't, we cannot help you. We won't be able to treat you better. And that's our aim, of course.

Rae: Of course.

Sandra: Yeah.

Rae: So, can I ask a two-part question first? ADHD and PMDD and postpartum depression and mental-related disorders, is that because of hormones and how estrogen affects ADHD?

Sandra: Yes. When I started to follow up on this question, is a request from women with ADHD to study their hormonal fluctuations issues, we send out a questionnaire to 200 women in this very conference asking about, do you experience premenstrual depression? That means that you have severe complaints in the last week cycle. Mental problems, mood problems, irritability, severe ADHD, your medication is less effective in the last week of the cycle.

Rae: Yeah.

Sandra: That's what the women tell us all the time, and how come, and we don't understand it. It ends in postpartum depression and perimenopausal problems. We found that ADHD women, compared to what we know from women in the general population of 2 to 3 times as frequent PMDD, postpartum depression, and perimenopausal depression. So, it's true that it's there. It's more often, it's more severe, and it's highly impairing.

Rae: Yes. I can attest to that.

Sandra: And premenstrual depression, for instance, reoccurs every month. So, every four weeks you have one week that you're unable to function well. You cannot do what you want. You're maybe, you feel maybe ashamed of your mood changes and your irritability, and you're shouting out to people, and then you have to make excuses in the next three weeks.

Rae: Then you spend the next three weeks apologizing.

Sandra: It's so frustrating it, and then you'll get so tired of yourself and many people, many women have low self-esteem due to that and they think it's their fault.

Rae: Yeah.

Sandra: Well, it's not their fault. It's the impact of hormonal decline on ADHD severity and...

Rae: And that's why it gets worse as you get older?

Sandra: Well, menopause is the most severe period because it lasts ten years. Thank you. And it's not something to look for because then women really can't function.

Rae: Yeah.

Rae: Because it's lasting so long. So, we need to find something to help. And there is a solution around the corner. That's good news.

Rae: Yeah, that's very good news. What is it?

Sandra: Oh, well, I started to study the literature because that's what we do. If we have questions, we try to ask the literature what's known about ADHD and hormones. Well, there was nothing but I could find information about what's known about neurotransmitters like dopamine. So, these are messengers in the brain, and we suppose that in ADHD dopamine is low or dysregulated. We don't know exactly. We kind of measure it, but the medication for ADHD increases the level of dopamine in the brain, and that helps a lot for the symptoms. That's what we know for sure.

So, dopamine is important for ADHD. Dopamine levels need to be increased somehow, someway. Estrogen happens to be a friend of dopamine. So, estrogen does similar things, has similar functions as has helped me. So, it improves memory. It improves cognition. It improves mood stability. Thank you.

Rae: Yes.

Sandra: Now we're talking. So, it's good to have estrogen the first few weeks of the cycle, and the last week, it lets you down.

Rae: Yeah.

Sandra: And suddenly, you feel so bad. So, we can, we can repair the level of estrogen using the pill continuously, if you can have it.

Rae: When you say the pill, you mean hormonal birth control?

Sandra: Yes. Anti-conceptive pill contains estrogen and progesterone. But in order to prevent a drop in estrogen again, you shouldn't have to stop a week.

Rae: Yeah.

Sandra: You should use it continuously. And this helps a lot of women. Not all, but a lot. The other option is antidepressants. The SSRIs, they have been shown effective in the past in a lot of studies for premenstrual depression because it's a form of depression, but it's more volatile. It's not, it's suddenly there and it's also suddenly gone. So, it's not like a depression that lasts longer. It's also takes longer to get effective an SSRI. It takes usually four weeks, but now it's, it can have an effect in a few days. So, it has to do with the speed of the change, I suppose, which can also interfere with this process od using SSRIs.

The third option is if we have low dopamine levels, let's say here in ADHD we have high estrogen and estrogen drops...

Rae: OK.

Sandra: Then you can understand that you can't cope because you need either one of both or preferably both to be able to control mood.

Rae: Got it.

Sandra: Cognition, memory.

Rae: And if you, if I'm thinking about this right, if you can then increase the level of dopamine you can make up for the drop in estrogen?

Sandra: Potentially.

Rae: OK.

Sandra: And maybe otherwise the other way around too. So, I get questions from my patients, "Can I treat my ADHD was estrogen?" Theoretically, it might. But I'm not going to advise this because it's a hormone and it has also other effects on the whole body, and hormone is quite influential in general. It always has more functions. For instance, it increases bone density. It's, it protects the heart. It protects the inner lining of blood vessels, which is good, I suppose. And that's why menopause comes with so many complaints when it's really going down and staying there forever.

Rae: I hope you're ready for a lot of acronyms, because here they come. Like a lot of women with ADHD, I also have what's called PMDD, premenstrual dysphoric disorder. I also had PPD, postpartum depression, which you can learn more about on our episode about ADHD and postpartum mood disorders with Dr. Catherine Birndorf, if you're interested. PMDD is basically a more severe form of PMS with symptoms like severe mood swings, depression, and even suicidal thoughts at times, brain fog, panic attacks, rage, headaches, insomnia, fatigue, weight gain. In a nutshell, it's awful. And it's awful every month.

And thanks to Sandra and other researchers like her, we know that women with ADHD are at much higher risk for serious hormone-related mood issues like PMDD and postpartum depression. We're just starting to understand what this means, though, and Sandra is one of the people leading the charge.

Sandra: The female heart is something that's, that not everybody is aware of yet. It's also new, so that there is a difference between the male and the female heart is one thing you need to understand. And we know from the male heart how it presents when you get a heart attack. You have pain on the chest, you get, you cannot get air, you feel nauseous, you start sweating, and you may have pain in your left pink and arm and shoulder blades and jaw. It's all on the left side.

Rae: Yeah. These are all things I've heard about. But I can tell you, I wouldn't know if I was having a heart attack if it's different for women. I only know those symptoms.

Sandra: Well, it's not different for all women. It's always mixed. But women may have different presentation of heart attack. And what's really frightening is that the number one cause of death in women is cardiovascular disease.

Rae: Is that globally?

Sandra: Yes.

Rae: Wow.

Sandra: And it's not known. Everybody thinks it's breast cancer. And we spend a lot of money in, to prevent breast cancer, to create awareness, to let women investigate their breasts, and to have a population-level controlled mammography, and so on. But we do nothing for cardiovascular disease while it's the number one cause of death. That's strange if you think about it. So, we can only change it if we say it aloud. So, here I am. And I'm not a cardiologist, but I'm working with a cardiologist. So, she is teaching me about it and I'm bringing her message into psychiatry.

And she is, I'm teaching her about ADHD and she's bringing it into her domain. Same is true for kinesiology. So, this is the H3 connection, the head heart hormones connection that we were talking about. Now, back to the female heart, the female heart seems to be different in a way that it can have cardiovascular pain, pain on the chest based on cardiovascular spasms.

Rae: Cardiovascular spasms?

Sandra: That means that the vessel, the blood vessels of the heart itself, micro coronary arteries, they have cramps. And when they cramp, you have no oxygen to the muscle of the heart. Same as when it's obstruction. It's basically, the same is happening, but it's only a temporary occlusion. It's a spastic, spastic component. So, it cramps. You get pain. You get ischemia of the heart muscle, so, cardiovascular. Heart infarction-like complaints. But it feels different. It's like as if your bra is sitting too tight.

Rae: Like a constriction?

Sandra: Like you feel like in a harness. You cannot sigh deep.

Rae: Yeah.

Sandra: And this happens also in rest. So, not only during effort which is typical for the atherosclerotic occlusion heart disease.

Rae: You said, something but I don't know, atherosclero...

Sandra: Sorry. Atherosclerosis means that your cholesterol is in the blood vessels making occlusion.

Rae: And that's what would cause a heart attack?

Sandra: Yeah. Because the blood cannot stream through to the heart muscle that needs oxygen to function. But every organ needs oxygen.

Rae: Yeah.

Sandra: So, bloodstream, and if the blood is, is not let through either by a clot or by spastic moment, you get pain.

Rae: And is that more common for women with ADHD, these cardiac spasms?

Sandra: We don't know yet. We have to study that. But what we found, firstly, is that the cardiologist, my friend Janaka Biticook, she said "The women you describe with ADHD, I see them on a daily basis in my office." "Oh yeah. Is that true? How come?" She said, "I don't know, but I think it's it's at least 25%." I said, if that's true and this is very new, we should screen. So, here's my screener." And she started screening in 300 women that entered her office in a certain period.

Rae: Yeah.

Sandra: All women got this questionnaire and we found it was even more. It was 35%. So, more than one-third of her clinic consisted of women with ADHD. And she is treating especially women during perimenopause. So, all women were perimenopausal and 35% of them had ADHD symptoms lifetime. This was only screening, not assessment. It's not a diagnosis. Some of them had a diagnosis, but not all. And then she started referring these patients to me because she said "I can't get them better for their heart problems if the stress remains so high."

Rae: And ADHD causes higher levels of stress?

Sandra: ADHD is stress. Isn't it?

Rae: Yes. Yes.

Sandra: It causes so much effort to keep up with all your own expectations, expectations of society. Making mistakes, forgetting stuff, blaming yourself all day and night. It's super stress and it's on a daily basis and it's from childhood. So, it's so chronic that it's really risky.

Rae: Yeah. And it takes a toll on your heart.

Sandra: It can. Well, we don't know enough about it, but we did, we do have some publication showing that the spastic heart disease is especially occurring in women with stress, anxiety, and depression. If you say stress, anxiety, and depression, you say ADHD as well.

Rae: Yeah.

Sandra: Because this is co-morbidity and ADHD. That's a rule rather than the exception. And stress is ADHD's middle name.

Rae: Stress is ADHD's middle name. That makes a ton of sense to me.

Sandra: So, we still have to study whether this is true, but we, I suspected this might be the case in my women, in my female patients. So, what we're now trying to do is find out whether or not ADHD is also more prevalent in women with established cardiovascular spasms, temporary occlusion of the arteries. And by screening in that population where we have an official diagnosis of these spastic occlusions.

Rae: I'm fascinated by this. And also, not to make a pun, but disheartened that it wasn't part of the conversation before. To take it back to the doctor thing, this is the kind of thing that I could imagine going to a doctor and saying, "I've learned this thing about my heart. I have ADHD, I have experienced PMDD, I've experienced postpartum depression. What can I do?" And they would say, "I don't know." Or they might even say, "We don't know that to be true yet." And I think a lot of people who are listening to this might feel like, "Wow, this is great information. What now?"

And a lot of it sounds like it comes down to how do you talk to your doctor and how does your doctor respond to you when you try to talk to them? And for a lot of women, that's not often a great experience. You bring something up and it's brushed away, dismissed. And it's, it can be this, it can be a difficult thing, especially for people who have ADHD, who are often, I think, not believed when we bring problems forward because it's like, well.

Sandra: A lack of knowledge is a big problem always, because if you don't know you are not a doctor, you don't feel comfortable to say yes or no on a question or to act accordingly. So, the only solution to this problem is education, education, education, education education, and education. So, and who can bring this education? I can do it. But it will be too slow for all those who are in waiting. So, I think the women with ADHD can have a big role in educating their own doctor, because then they bring the knowledge to the exact place where it should be, so that they get help.

Of course, you cannot say, "Treat me like this because Dr. Kooij says so." Nobody will believe that. But well, we will publish what we can, and you can bring those papers to your doctor. So you can say, "Well, there is some evidence here or there some directions or some initiatives."

And so, for instance, if a woman needs hormone replacement therapy, and her GP is not willing or reluctant or not, has not enough knowledge about the new hormones and how safe they are, and that you can do it much easier than in the past, we bring the guideline to the to the patient, and patient brings the guideline to do that. And then it comes exactly at the right place. Your doctor. So, this is a way that you can enhance knowledge of your own GP or a specialist. And it will not guarantee that he or she is willing to take it and help you accordingly. But it is a beginning. It's a start.

Because we need knowledge. Everybody needs knowledge to be sure that you do the right thing. So doctors are not always not willing, but they want to do the right thing and they want to, they need some reassurance. So, that's why science has a big role to play. And we need more research and we need more funding. And the data is not enough and it's not taken seriously so far. So, it's a big fight actually, tht we're trying to to fight together. Because we learn that we are more powerful if we join forces with cardiology and gynecology, because then suddenly someone, everybody sees the whole picture, isn't it?

Rae: Yeah.

Sandra: And when you say head heart hormones, it's not psychiatry complaining about lack of funding. No. It's mental and physical health care working together for funding for women.

Rae: And it sounds like patients are part of that fight now. You're bringing them to the front.

Sandra: Absolutely, because it starts with the patients. Everything I learned, I learned from the patients because no doctors could advise me in the beginning. There was no knowledge except here in the United States. I went here for courses 30 years ago. As a young resident, I went to APSARD, and follow courses. Yes, I did. And now I come back, bring my knowledge here. That's interesting.

Rae: Hey, just to note, we covered a lot in this episode and as someone who spent a ton of time trying to find information on ADHD and my body and really wishing it were gathered up somewhere I could just find it, I thought this was a great week to go a little bit overboard with resources in the show notes.

If you want to learn more about anything we discussed on the show today, we'll link to some of the research on ADHD and PMDD that Sandra's contributed to, and to her work on the ADHD Power Bank and the Head Heart Hormones Foundation. We've also put a link to our episode about ADHD and postpartum depression with reproductive psychiatrist Dr. Catherine Birndorf, and a bunch of other resources on ADHD and hormones that might be useful. Thanks for listening and we'll see you soon.

If you have any questions or ideas for future topics, write me an email or send a voice memo to hyperfocus@understood.org.

"Hyperfocus" is made by me, Rae Jacobson, and Cody Nelson. Our video producer is Calvin Knie, our music comes from Blue Dot Sessions and Justin D. Wright mixes the show. Ash Beecher is our supervising producer, Briana Berry is our production director, and Neil Drumming is our editorial director.

This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere and Seth Melnick. Understood is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. Do you want to help us continue this work? You can donate at Understood.org/give.

Host

  • Rae Jacobson, MS

    is the lead of insight at Understood and host of the podcast “Hyperfocus with Rae Jacobson.”

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