Understanding My Health — A Guide for Partners and Loved Ones

This page explains my health conditions in plain language. No medical jargon, no academic citations. Just what you need to know.

The Short Version

I have three interconnected conditions, all confirmed by testing:

1. AuDHD — combined ADHD (inattentive type) and autism, both diagnosed in adulthood
2. HFE iron overload — a genetic condition where my body absorbs and stores too much iron, causing organ and brain damage over time
3. Trichotillomania — compulsive hair pulling, driven by the neurobiology of the first two conditions

These aren't separate problems. They feed into each other, and poor sleep amplifies all of them.

What Each Condition Actually Means

ADHD (Inattentive Type)

My ADHD isn't the stereotype of a hyperactive child. It looks like:

• A mind that won't stop racing, even when I look calm
• Difficulty starting or finishing tasks, especially boring ones
• Losing track of conversations, forgetting things I was just told
• Time blindness — genuinely not knowing how long something took or will take
• Executive function problems — knowing what I need to do but being unable to make myself do it

This isn't laziness. The dopamine system in my brain doesn't regulate properly. Elvanse (my medication) helps, but it doesn't fix everything.

Autism

I was diagnosed as an adult because I learned to hide my autistic traits — this is called masking. I've been doing it for 37 years without knowing. It looks like:

• Sensory sensitivity — loud noises, bright lights, certain textures, strong smells can be physically overwhelming
• Social exhaustion — I can socialise, but it costs enormous mental energy. I'm essentially translating between my brain and the social world in real time
• Need for routine and predictability — unexpected changes genuinely distress me, not because I'm inflexible but because my nervous system treats uncertainty as a threat
• Difficulty reading my own body — I often can't tell when I'm hungry, tired, stressed, or in pain until it's already severe (this is called poor interoception)

The masking cost is real. When I come home drained after socialising or a normal day, that's not introversion — it's autistic burnout. Years of masking have accumulated, and my reserves are depleted.

Iron Overload

My genes (HFE C282Y/H63D) tell my body to absorb too much iron from food. Iron is essential, but excess iron is toxic — it creates oxidative damage, like rust inside your body.

Where the damage happens:

• Brain — iron deposits in areas that control habits, motivation, and mood. This directly worsens my ADHD, drives the hair pulling, and causes fatigue
• Pituitary gland — iron damages the gland that controls testosterone. Low testosterone means less energy, motivation, and recovery
• Joints — iron deposits in cartilage cause arthritis-like pain (my lower back)
• Liver — can cause scarring over time if untreated
• Gut — iron overload disrupts healthy gut bacteria, which affects mood and inflammation

My blood tests show this is real: ferritin was 738 (normal is under 150), and transferrin saturation is 60% (damage starts above 45%).

Trichotillomania

Hair pulling isn't a habit I can just stop. It's driven by brain chemistry:

• Too much glutamate — an excitatory brain chemical that my H63D gene variant makes worse. My brain is essentially over-excited in the circuits that control impulses
• Iron in the basal ganglia — the brain's habit centre has iron deposits that disrupt its ability to inhibit repetitive behaviours
• Poor interoception — I can't detect the building tension in my body until it's overwhelming, and pulling is the only release my nervous system finds
• Understimulation — when my ADHD brain is bored or under-engaged, pulling provides sensory input

The pulling is a symptom of neurological overload, not a failure of willpower. It responds to reducing the underlying pressure, not to willpower or attention.

Why Sleep Matters So Much

Poor sleep isn't just tiredness. For me, it's a central amplifier — it makes every other condition worse through specific biological mechanisms:

• Brain iron accumulates faster — the brain's waste-clearance system (glymphatic system) only works properly during deep sleep. Bad sleep means iron and toxins build up
• ADHD gets worse — sleep deprivation directly impairs the prefrontal cortex, the part of the brain that Elvanse is trying to help
• Sensory sensitivity increases — less sleep means lower tolerance for noise, light, and touch
• Hair pulling increases — worse executive function means less ability to resist urges
• Gut bacteria are disrupted — poor sleep causes its own gut inflammation, feeding back into the iron-overload damage
• Cortisol rises — stress hormones go up, which drives more inflammation and more iron absorption

The vicious cycle: poor sleep → worse symptoms → more stress → worse sleep.

This is why sleep interventions are a top priority in my treatment plan.

Why the Fatigue Is So Severe

This is probably the hardest part to understand from the outside. The fatigue isn't just "being tired" — it's the result of multiple biological systems being under strain at the same time:

1. Iron toxicity — excess iron creates free radicals that damage my cells' energy production
2. Hormonal impact — iron deposits in the pituitary gland may be affecting testosterone and other hormones
3. The masking debt — 37 years of unconsciously performing neurotypicality has a cumulative cost
4. Sleep disruption — see above
5. Mineral depletion — iron overload suppresses copper and zinc, both needed for energy metabolism
6. Dopamine dysfunction — iron disrupts the very system my ADHD medication is trying to support

When I crash after what looks like a normal day, it's because that day genuinely cost me more energy than it would cost most people. Treatment is aimed at reducing these drivers one by one.

What I'm Doing About It

Medical Treatment

• Therapeutic phlebotomy — regular blood removal to reduce iron stores (like blood donation, but prescribed). Target: get ferritin under 100
• Endocrine testing — checking testosterone, thyroid, and other hormones affected by iron
• Liver assessment — checking for iron-related damage
• Ongoing blood monitoring — tracking iron, minerals, and vitamin levels quarterly

Medication

• Elvanse 70mg — for ADHD. It helps with focus and executive function but suppresses appetite (which makes eating enough harder) and can affect sleep if taken too late
• NAC — a supplement targeting glutamate (the brain chemical driving hair pulling) and protecting against iron-related cell damage. Clinical trials show 56% response rate for trichotillomania

Supplements

• Methylfolate, magnesium, zinc, vitamin D, fish oil, creatine — all addressing specific deficiencies or protective mechanisms

Diet

• Tea or coffee with every meal (tannins block iron absorption)
• Calcium-rich foods with meals (also blocks iron)
• Less red meat, more poultry, fish, and plant protein
• No vitamin C supplements (enhances iron absorption)

Sleep

• Consistent bedtime and wake time
• Melatonin if needed
• Sensory-friendly bedroom (dark, quiet, cool)
• Earlier Elvanse timing to reduce evening stimulant effects

Things That Help — and Things That Don't

I know none of this is easy to navigate. These notes aren't a criticism of anything you've done — they're my best attempt to explain what's going on inside my head and body so we can work with it together.

Things That Make a Big Difference

• Trusting that the tiredness is real. I know it can look like I'm fine, or that I should have more energy than I do. The fatigue has real biological causes, and rest genuinely is part of managing it.
• Letting the hair pulling be. I know it's hard to watch. But the pulling is a pressure valve — it gets worse when I'm overloaded, and drawing attention to it adds shame on top of whatever's already overwhelming me. If you notice it increasing, it's a sign I need less on my plate, not a conversation about the pulling itself.
• Sleep as a team project. Consistent bedtimes, a dark and quiet bedroom, winding down together — this is genuinely the single biggest thing that improves everything else. It helps me, and honestly it's good for both of us.
• Space after intense days. If I've been socialising or managing a demanding situation, I may need to go quiet for a while. It's not about wanting to be away from you — it's that my nervous system needs time to recover.
• Food when my appetite disappears. Elvanse suppresses my appetite heavily. Having easy, calorie-dense food around (nuts, avocado, full-fat dairy, things I actually like) helps a lot. A gentle nudge to eat is welcome — I sometimes genuinely don't notice I'm hungry.

Things That Feel Harder Than You'd Expect

These are well-meaning things that most people would say — they just don't land the way they're intended with these conditions:

• "Just try harder" — I want to. Executive dysfunction means there's a gap between wanting to do something and being able to start it. It's not motivation, it's neurology.
• "Everyone gets tired" — I understand why this feels like perspective, but my fatigue has six simultaneous biological drivers. It's a different kind of tired.
• "Can you just stop pulling?" — If I could, I would have by now. The urge is neurological, not a choice.
• "You seem fine though" — Masking is what I've done for 37 years. Looking fine and being fine are completely separate things for me.
• "It's not that loud" — Sensory experience is genuinely different for autistic people. The sound or light really is that intense for me, even if it isn't for you.

Early Warning Signs

I'm not always good at recognising when I'm heading toward burnout (poor interoception is part of autism). You might notice these before I do:

• More hair pulling than usual
• Going quiet or withdrawing from conversation
• Forgetting things I'd normally handle fine
• Reacting strongly to small things
• Exhaustion after seemingly minor activities
• Struggling to make even simple decisions
• More fidgeting, pacing, or rocking

If you spot these, the most helpful response is simply to take things off my plate where you can, offer some quiet time, and know it's not about you. It passes.

The Bigger Picture

These conditions aren't going away, but they're being actively managed. Treatment is working — my ferritin has already dropped 48% in three months. As iron levels come down, energy, mood, sleep, and executive function should all improve.

This research vault exists because I needed to understand why I was struggling and what could be done. Every note is backed by real academic research. If you want to understand any specific topic in more depth, the Health Research MOC is the starting point.

The most important thing to know: none of this is a character flaw, a choice, or something I can willpower my way out of. These are biological conditions with biological treatments, and I'm actively pursuing them.

Cross-References

• Health Research MOC — full research index
• Action Items and Monitoring Plan — what's being done and when
• Diet and Supplement Strategy — current supplement and diet protocol
• research/Poor Sleep and AuDHD-HFE Interactions — why sleep is the central amplifier
• Fatigue and Burnout — the multifactorial fatigue model
• Trichotillomania and Neurodevelopmental Links — the neuroscience behind hair pulling
• Late-Diagnosed Autism - Distinct Profile — why autism was missed until adulthood