ADHD Women's Wellbeing Podcast

Episode: The MOST Up-to-Date ADHD & Women's Health Research
Host: Kate Moryoussef
Guest: Professor Sandra Kooij
Date: October 3, 2024

Episode Overview

This episode features Professor Sandra Kooij, an internationally recognized expert on adult ADHD, with a focus on her latest research into ADHD in women, particularly regarding hormones, health comorbidities, long COVID, and the diagnostic landscape. Host Kate Moryoussef and Professor Kooij discuss the evolution of ADHD understanding since 1995, modern research into hormonal impacts, undiagnosed ADHD, the intersection with heart and immune health, and new clinical approaches for women at different life stages.

Key Discussion Points & Insights

1. The Evolution of Adult ADHD Recognition

[03:25 – 06:07]

• Origins of Adult ADHD Diagnosis:
  Professor Kooij describes how adult ADHD was virtually unrecognized in medical literature and training in the 1990s. After identifying a misdiagnosed patient, she pursued study in the US and initiated research and guidelines development in the Netherlands.

  “In the beginning, ADHD in adults did not exist… It was not in the books, nothing.” – Prof. Sandra Kooij [03:28]

• Building a Network and Knowledge Base:
  Prof. Kooij highlights her role in creating professional networks and educational platforms to broaden access to ADHD care and knowledge:

  “You need new information always to be up to date and… share knowledge with the world, with patients and professionals.” – Prof. Sandra Kooij [05:56]

2. The Ongoing Struggle for Recognition in Psychiatry

[06:07 – 11:23]

• ADHD is Undervalued in Mental Health Training:
  Despite progress, ADHD is still not a core component of psychiatric education, leading to misdiagnosis or overlooked cases—often with dire impacts on patients’ lives.

• Misattribution and Root Cause Neglect:
  Kate and Sandra discuss how ADHD is often missed when assessing co-occurring conditions like eating disorders, anxiety, or OCD.

  “20% of psychiatry suffers from ADHD. So under every diagnosis, other diagnosis, 20% of people also have ADHD. That's neglected, that's not treated, that's making them chronic. And that hurts my soul…” – Prof. Sandra Kooij [08:19]

• Curiosity and Self-Education in the ADHD Community:
  Both note the proactive learning and advocacy by people with ADHD, often filling gaps left by professionals.

  “People with ADHD teach me all the time what I should do next.” – Prof. Sandra Kooij [11:07]

3. Hormones & Women’s ADHD: Research Updates

[11:23 – 22:13]

• Higher Rates of Hormonal Mood Disorders:
  Prof. Kooij’s pivotal studies showed women with ADHD face 2–3 times higher rates of severe premenstrual depression (PMDD), postnatal depression, and perimenopausal symptoms compared to neurotypical women.

  “They were suffering two to three times as frequent... from premenstrual depression, not PMS, but depression. The more severe form, including suicidal thoughts… postnatal depression was three times increased…” – Prof. Sandra Kooij [13:13]

• Estrogen, Dopamine, and Symptom Fluctuation:
  Estrogen acts like a neurotransmitter in the brain, supporting dopamine—both drop during specific hormonal phases, which may explain severe ADHD and mood symptoms.

  “…when your estrogen drops… you have twice nothing to control your behavior, your feelings, your cognition, your memory.” – Prof. Sandra Kooij [15:34]

• Clinical Strategies Emerging:

  • Stimulant Dose Adjustments: Some women benefit from a higher ADHD medication dose premenstrually—case series shows positive outcomes, but larger studies needed.

    "...little increase of the dosage of stimulant medication in the premenstrual week... all were happy and wanted to continue..." – Prof. Sandra Kooij [17:52]

  • Continuous Use of Birth Control Pills: Preventing estrogen drops by continuing the pill without breaks can help some.
  • SSRIs: The established use for PMDD, potentially for some with ADHD.

• Unique, Ever-Changing Needs:
  Effectiveness of hormone- or medication-based adjustments may change with age, and a “dance” of adjustments is often necessary.

4. Early Menopause, Heart Health & Systemic Risks

[22:13 – 28:24]

• ADHD Linked to Earlier Menopause:
  New research points to genetically driven earlier menopause for women with ADHD, raising risks for osteoporosis, heart disease, and mental health.

  “Research recently showed that women with ADHD have earlier menopausal onset… it's not in your advantage because your bones will lack estrogen…” – Prof. Sandra Kooij [22:13]

• Urgency in Addressing Hormonal and Cardiac Risks:
  Professor Kooij is part of a Dutch network connecting psychiatry, gynecology, and cardiology, following findings of elevated ADHD prevalence among women with cardiovascular disease.

  “…in the 300 women that we screened for ADHD, that 35% screened positive. So that's a high, high number.” – Prof. Sandra Kooij [26:01]

• Protective Role of Estrogen:
  Continuing HRT and estrogen support helps reduce risks for heart disease, osteoporosis, and mood decline.

5. Long COVID, Immunity, & ADHD

[28:24 – 36:32]

• Increased Vulnerability:
  People with ADHD have significantly higher rates of COVID and long COVID due in part to underlying immune and connective tissue vulnerabilities.

  “People with ADHD have two to three times more often Covid and also long Covid… The immune system is failing...” – Prof. Sandra Kooij [29:53]

• Hypermobility Link:
  Many with ADHD display traits of hypermobility and thin connective tissue, contributing to immune dysfunction, inflammation, migraines, and even syncope (fainting).

• Speculative Paradigm Shift:
  Prof. Kooij suggests neuroinflammation may underlie ADHD and related psychiatric symptoms, and future treatments could focus on anti-inflammatories, as many current ADHD medications are incidentally anti-inflammatory.

  “Maybe psychiatry will end, because it might be brain inflammation after all.” – Prof. Sandra Kooij [35:23]

6. Dementia, Aging, and Diagnostic Gaps

[38:07 – 42:46]

• ADHD in Geriatric Care:
  Adults with undiagnosed ADHD may later be misdiagnosed with cognitive decline or dementia as their historically lifelong attention problems worsen with age.

• Consequences of Misdiagnosis:
  Correct ADHD identification in later life can significantly alter treatment and prognosis.

  “…they are diagnosed for cognitive decline while they may have lifetime ADHD undiagnosed, and the doctors… have never heard of ADHD except in childhood…” – Prof. Sandra Kooij [38:34]

• Diagnostics Tailored for Women:
  Her team is adapting the DIVA-5 ADHD diagnostic interview to include examples more relevant to women’s lived experiences, cycles, and masking effects.

7. Changing the System: Future Directions

[42:46 – 45:08]

• Challenge of DSM Revision:
  Adjusting official diagnostic criteria is slow, with skepticism from governing bodies. However, more tailored interview tools and global collaboration are underway.

  “…if we, with all the other ambassadors of the Diva 5 in all countries… agree that it's necessary to adjust the examples to the female presentation… it will be a step up towards changing the criteria in the future, I hope…” – Prof. Sandra Kooij [43:38]

• Multi-Generational Impact & Advocacy:
  Many women are diagnosed late, often through their children, and working to break cycles of undiagnosed ADHD, health risks, and stigma.

Notable Quotes & Memorable Moments

• “I had to study a lot to make this diagnosis for her because I was virtually ignorant. And this diagnosis fitted very well and the family cried because it was such a real prescription of her problems.”
  – Prof. Sandra Kooij [03:50]

• “20% of psychiatry suffers from ADHD. So under every diagnosis, other diagnosis, 20% of people also have ADHD. That's neglected, that's not treated, that's making them chronic. And that hurts my soul…”
  – Prof. Sandra Kooij [08:19]

• “You are not able to fulfill any task that you intended to do in that week… it’s really understandable. And people, women were so enthusiastic when we wrote this down… because they said, there's an explanation for us. We are not stupid. We are not crazy. It's not our fault.”
  – Prof. Sandra Kooij [16:11]

• “Early menopause in women with ADHD… It's not in your advantage because your bones will lack estrogen for being dense. The fractures that come when you are 60 are ahead. So you must be protected from an early age…”
  – Prof. Sandra Kooij [22:23]

• “Maybe psychiatry will end because it might be brain inflammation after all.”
  – Prof. Sandra Kooij [35:23]

Key Timestamps

• 03:25 – Professor Kooij’s early experiences diagnosing adult ADHD
• 07:27 – Ongoing struggle to educate psychiatrists about ADHD
• 12:07 – Launch of hormone-focused research in ADHD women
• 13:13 – Evidence of higher PMDD and postnatal depression rates in ADHD
• 15:34 – Dopamine, estrogen, and cognitive/emotional control
• 17:52 – Clinical strategies: adjusting medication or using hormones
• 22:13 – Early menopause and related risks in women with ADHD
• 26:01 – ADHD, heart health, and the H3 network
• 29:52 – ADHD, immunity, and increased vulnerability to COVID/long COVID
• 35:23 – Conceptualizing ADHD as brain inflammation
• 38:34 – Risks of misdiagnosis of ADHD as dementia in the elderly
• 43:38 – Adapting DIVA-5 and aiming for change in diagnostic practice

Conclusion

Professor Sandra Kooij’s work charts a path from the foundational recognition of adult ADHD to leading-edge research into how hormones, immunity, aging, and cardiovascular health all interact—especially for women. Her insistence on better education, integrated research, and the adaptation of clinical tools is helping change the narrative around ADHD, supporting those who are often missed or misunderstood in medical systems.

For further reading and all relevant links, refer to the show notes accompanying this episode.