Women with ADHD are frustrated with a medical community that can’t answer their questions about how hormones impact ADHD. Searching for answers, they turn to online communities for information and support.Danielle talks to experts about the latest research on ADHD in women, and what the future of treatment could look like.More on this story:A guide to hormones and ADHDADHD and periodsADHD and menopauseFor a transcript and more resources, visit the episode page on Understood.org. Understood.org is a nonprofit organization dedicated to empowering people with learning and thinking differences, like ADHD and dyslexia. If you want to help us continue this work, donate at understood.org/give
Chapter 1: What questions do women with ADHD have about hormones?
My questions about ADHD and perimenopause fit into a bigger category, ADHD and hormones. And I'm not even slightly the only person asking about them. Women have posted all sorts of stories and questions about ADHD and hormones on Reddit. Allow me to read you one of those posts.
Hey y'all, I just got back from a session with my psychiatrist, and she shared with me something that's kind of blown my mind. Apparently, that's in all caps, girl hormones throw all sorts of wrenches into ADHD and ADHD medication. After that conversation with her psychiatrist, the woman started tracking her symptoms alongside her menstrual cycles. She noticed, It's like clockwork.
The post is from four years ago. Back then, it was filed under the hashtag Tips and Techniques. Today, there's an entire category on Reddit called ADHD and hormone-related issues.
Women write about having increased cognitive difficulties, irritability, depression, rejection sensitivity, and other symptoms, usually during the second half of their menstrual cycles, during postpartum, perimenopause, and menopause. One woman said her ADHD eased when she became pregnant and then became unmanageable when she stopped breastfeeding.
Another said she thought she had her ADHD handled until she hit perimenopause. She wrote, In yet another post, a woman said she is fairly certain she has ADHD, but her doctor can't diagnose her. Her symptoms came on during menopause, and according to the DSM, symptoms must start by the time a person turns 12. Her doctor is following that guideline.
Reading this brought me back to my earlier question. Is it possible to develop ADHD later in life? The women writing these posts are frustrated. The author of the first one captured the feeling well. She wrote, so at least I know why these issues are happening and that's kind of a relief. I'm not broken. I'm not not trying hard enough. I'm not a mutant. Why doctors didn't tell me this before now?
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Chapter 2: How do hormonal changes affect ADHD symptoms?
No effing clue. The questions and frustrations are not exactly new. Sari Solden told me women have been asking them for decades. But the rise in diagnosis means many more women are asking about hormones and ADHD. Most of them want to know how to adjust treatment to account for these hormonal swings. Doctors and scientists don't have solid answers. At least, not yet.
On this final episode, I'm going to let you hear from a few researchers. We're going to talk a lot about hormones and why we don't yet understand, scientifically, how those hormones affect women with ADHD. or whether it's possible to develop ADHD after the age of 12.
We're going to hear what treatment might look like in the future, if, and that's a big if, if scientists and the agencies that fund scientific research choose to prioritize the needs of adult women with ADHD. This is Climbing the Walls, a podcast where I try to figure out why so many women are being diagnosed with ADHD. I'm Danielle Elliott. Let's go back in time just a little bit.
For most of medical history, clinical research operated under the false assumption that if you study men, the findings will pertain to women. In 1986, the NIH issued a new policy encouraging scientists to include women in research studies. Things started to change in 1991, when a woman named Bernadine Healy became the first female NIH director.
Two weeks into her tenure, Dr. Healy launched the Women's Health Initiative. Over the next 15 years, the initiative enrolled more than 150,000 postmenopausal women in clinical trials. The initiative is the reason we know about long-term risks associated with hormone replacement therapies, especially when used by postmenopausal women.
Still, the NIH policy recommendation didn't spread far and wide. Women, with all our pesky hormones, were just too difficult to study. Widespread change only started in 1993, when Congress passed a federal law requiring that women be included in clinical research. 1993. 30 years later, I struggled to find researchers who are focusing on ADHD and hormones.
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Chapter 3: Can ADHD develop later in life?
I found studies showing that estrogen helps distribute important neurotransmitters like dopamine and serotonin throughout the brain so that they can help with things like cognition and mood. When estrogen decreases and progesterone rises, it impacts brain function. The studies on estrogen and progesterone are helpful, but none of these studies are specifically about ADHD brains.
And if we have any hope of developing better treatments for ADHD, we need to know how this science specifically applies to ADHD brains, which, by the way, already have a hard time circulating these neurotransmitters, even on a good day. So how do these hormonal fluctuations impact ADHD brains? I looked for experts in this.
There are several ADHD coaches and clinicians who specialize in supporting women during different life stages. But scientists who study ADHD at these stages? I struggled to find any. I wondered if I just wasn't looking hard enough. Then, in February 2024, a new study led me to potential answers.
So I had started off as kind of almost this in-home aide, working with a young girl who was at the very beginning of puberty. And she was experiencing a lot of symptoms of ADHD, as well as anxiety, depression, and some behavioral problems.
This is Ashley Ang, the lead researcher on the February 2024 paper.
And as I was working with her over a couple years, I noticed that as she was going through puberty, everything just kind of got worse, despite having a psychiatrist, me in the home helping her get off to school, the parents being very involved. Things just seemed to keep getting worse, despite all of the care that she was receiving.
Ashley learned that this was not a unique situation. It seemed to occur with other kids around the same age.
And so with that, I really wanted to study when I was looking at PhD programs was what is going on during this time period around puberty that just seems to be making everything worse.
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Chapter 4: What is the significance of the Women's Health Initiative?
Ashley chose the RISC lab at the University of Kentucky under the guidance of Dr. Michelle Martel. Dr. Martel was in the midst of an NIH-funded study examining ADHD symptoms across the menstrual cycles of young women with ADHD.
And I, during my interview, had proposed, have you thought about looking this in adolescence? So it was the perfect combination of I'd be able to help her with her research and she'd be able to help me learn how to do this research. and learn how to look at this in adolescence.
Ashley's research ultimately confirmed what women have been reporting for decades.
Broadly, we found that ADHD symptoms are changing across the menstrual cycle. We also saw some connections with different hormones.
Several other factors impacted symptoms, including perceived stress. But the role of hormones was undeniable. Now, if you're thinking, yes, we know that hormones change symptoms. Why do we need a scientist to confirm what thousands of women have already experienced? I get it. But that's how science and medical treatments work.
To develop treatments that help with hormones and ADHD, we need to understand the underlying science. For decades, it wasn't studied. Scientists focused on kids and teens with ADHD, primarily boys with ADHD. Technically, Ashley focused on adolescents, but because she studied hormones, her results can tell us about ADHD at different life stages.
Her results show that, quote, She determined that in the two points in the menstrual cycle when estrogen decreases, that's where ADHD symptoms are worse. These results line up with those of other studies at the Risk Lab, including the long-term study that Ashley's mentor, Dr. Martel, is working on.
We are seeing that for these young adult females, we're seeing very similar changes of hormones impacting ADHD symptoms. We're also thinking that there's other reproductive life events like pregnancy, perimenopause, that might also be experiencing these changes around ADHD symptoms.
This aligns with what women and clinicians have long reported. But as far as scientific research, it's groundbreaking. Ashley told me the overall goal of her research is threefold. First, to understand hormones and ADHD. Next, to personalize treatments.
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Chapter 5: How can treatment for ADHD be personalized?
And even when research is done, it takes a long time to develop new treatments. The process of getting research from the lab to the people it impacts, known as bench-to-bedside, takes an average of 17 years. I asked her what we can hope for. What would progress look like 15 years from now?
I'd be happy that if in 15 years this was something that physicians even knew about, that they were talking about with their patients, that this is something that they might be experiencing. So if we can get to that point and researchers have moved on to interventions, I think that that would be an okay place for us to be.
It's kind of a slow-moving process, but that is kind of the realistics of research.
It's possible that this will move faster because we don't need to discover and test new medications. Rather, we need to figure out how to better use the existing ones. An increase in attention on this subject might also help. Ashley told me she gets a lot of emails from young researchers who are interested in studying hormones and ADHD.
And that gives her hope that research will push forward, so long as it gets funded. The third goal of Ashley's work is to improve the assessment process. And as we started talking about that goal, I realized her work sheds light on one of my main questions. Is it possible to develop ADHD later in life?
Her study indicates that hormonal changes can create different levels of impairment in different women. This stuff is complicated, but to me, at least, this suggests that some women only begin to really struggle with ADHD as they get older. The DSM currently says that symptoms must develop by the age of 12.
That's an improvement from the original guideline, which called for symptoms to develop by the age of 7. Still, 12 might not be a big enough change. Ashley's study indicates that it's possible that, like so much with ADHD, this diagnostic criteria is based too heavily on observations of boys.
I think overall it is a criteria that might need some flexibility. I think 12 is a very arbitrary number, and so that could be something that's updated in the future.
Ashley's study was published in the journal Hormones and Behavior in February 2024. Experts in the field celebrated her work. A prominent ADHD expert, Dr. Russell Barkley, praised it. On his YouTube page, he posted a video explaining the importance of Ashley's study.
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Chapter 6: What future research is needed on ADHD and hormones?
Women are helping each other find answers, often in the absence of more scientific answers. For every woman who skirts the regulations and finds ways to experiment with hormone-based medications, many others write about doctors brushing off their concerns about hormones or their request to try hormone-based treatments.
So far, there just isn't enough scientific evidence to support prescribing a particular birth control for women with ADHD or adjusting medications as hormones fluctuate. When I spoke with Ashley, she stressed that scientific research could conclude that the risks outweigh the benefits. She also emphasized that it will not be a one-size-fits-all approach.
We need more studies like Ashley's, perhaps even studies that consider actual adult women rather than extrapolating from research on adolescents and teens. Whether we'll ever have this evidence-based advice will depend on whether more studies are funded. I'm cautiously optimistic that more studies will be funded, thanks in large part to the rise in rates of ADHD among women.
I'm also optimistic that the timeline might start to move more quickly with the help of artificial intelligence. In the UK, a team of engineering and medical researchers are developing a machine to use AI to diagnose ADHD. The machine has so far detected ADHD with about an 87% rate of success.
Researchers are also using AI to study the effectiveness of different treatments for ADHD or elements of treatment, like exercise. Perhaps someone will soon ask AI to figure out how hormones impact ADHD symptoms and how to incorporate this into individual treatment. Perhaps. There's one more trend giving me hope.
A book called The XX Brain describes female-specific approaches to Alzheimer's disease. It discusses scientific evidence that women and men experience Alzheimer's differently and react differently to treatments. In the future, we will likely start to see the same in other conditions, particularly conditions that affect the brain, like dementia and, perhaps, ADHD.
Recently, I've been looking into research about pregnancy and ADHD. Is it safe to take stimulants while pregnant, while breastfeeding? So far, study results are conflicting. It's confusing. There are other questions, things I haven't even thought of or seen anyone asking on Reddit. Remember Emily Mitchell from the first episode?
Emily was diagnosed with hyperkinetic syndrome of childhood in the 1960s and with ADD in the late 1980s. Throughout her life, she's always thought about how to keep her brain healthy. But she started asking this question with more urgency in 2022. That year, Emily was diagnosed with breast cancer and found out that she was eligible for a fairly new type of treatment.
It includes taking estrogen blockers. She was 65 and had already gone through menopause, so she knew her body wasn't producing as much estrogen as it used to. But she also knew that estrogen is instrumental in cognitive function.
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Chapter 7: What are the implications of Ashley Ang's research?
Emily ultimately decided to take an estrogen blocker. With her doctors, she kept a close eye on brain function. Pretty quickly, she noticed a difference.
I was finding myself in meetings where I couldn't think the thing through. It was cognition. It's the, you know, the thing, the mojo you're looking for. And so it was affecting just the brain's calculus. You know, you're talking and you're in a meeting or something and you have to, it was just affecting my ability to do that.
She switched medications and felt an improvement on the second medication.
And because it was better, I know that there's something to it. I'm just not sure exactly how it works. So I'm now, that is my current kind of work now is to understand that better.
It's great that Emily's new treatment worked, but fascinating and also frustrating that no one can explain exactly how or why. Emily knew to ask these questions because she's always known how her brain works. With the recent rise in diagnosis, I have to imagine many more women will be asking this question in the course of cancer treatments.
So far, there just aren't enough scientific studies recommending the best courses of treatment for women with ADHD. As I said in the first episode, Emily's experience is remarkable in that, for the most part, science kept pace with her life. To have had an appropriate diagnosis and treatment as a child in the 1960s, and again as a young working mom in the 1980s, this is so rare.
Doctors provided answers every time she started asking questions. Will anyone rise to that challenge now? During the pandemic, the topic of ADHD suddenly seemed to be everywhere, particularly the topic of ADHD and women. And it wasn't just something I was overhearing in bars and on the subway. Major media outlets were questioning why so many women were being diagnosed.
Lately, though, the media explosion seems to have subsided a little, and that worries me a little. Recently, I've read or heard a couple of stories, all told by men so far, that seem to downplay ADHD as a disorder. This also worries me. You know what really worries me? In reporting this story, I spoke with a psychiatrist who told me that we're getting ADHD all wrong.
He's one of the authors of a 2006 paper on the evolutionary benefits of ADHD. He told me that when we talk about ADHD, we're probably grouping many different types of brains into one category. He said that there are probably thousands of types of brains within the global population, and we can't begin to comprehend the level of neurodiversity in the world.
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