Well – after having Single Nivo 2 (effectively cycle 6 of IPINIVO) and a consultation with my very lovely oncologist (the lady that did the session on long term effects of immunotherapy) my health took a rather steady decline over the weekend.
At my consultation I was asked for further bloods as the samples provided for the therapy had shown up some anomalous numbers that needed checking.
It would appear that the lovely topic of immunotherapy related adrenal insufficiency (not easy to type after a drink or two!!) has raised its head!!
Now it’s daily hydrocortisone and thyroxin for life!!
Yippee.
At least I’m here!
Living with adrenal insufficiency—especially when it’s caused by treatments like immunotherapy—means learning how to safely replace the hormones your body can no longer make, while still living a full, active life.
Here’s a practical guide to help manage it day-to-day.
🧠 What’s going on in your body?
Adrenal insufficiency means your body doesn’t produce enough cortisol, a hormone essential for:
- Energy levels
- Blood pressure
- Stress response
- Fighting illness
Without enough cortisol, even minor stress (like illness or injury) can become dangerous—this is called an adrenal crisis.
💊 1. Your medication is your lifeline
Most people take:
Hydrocortisone (most common) Or alternatives like Prednisolone.
Key principles:
Take it every day, on time (usually split doses) Mimic natural rhythm (more in morning, less later) Never suddenly stop
Think of it as replacing what your body should be making—not optional, but essential.
🔁 2. “Sick day rules” – absolutely critical
When your body is under stress, you need more cortisol.
Increase your dose if you have:
- Fever
- Infection
- Vomiting/diarrhoea
- Injury or surgery
Typical approach:
Double or triple your normal dose (as advised by your doctor)
If you can’t keep tablets down, you need an emergency injection:
👉 This can be lifesaving.
🚨 3. Know the signs of adrenal crisis
Seek urgent help if you experience:
- Severe weakness or collapse
- Vomiting
- Inability to take meds
- Confusion
- Low blood pressure / dizziness
This is a medical emergency—don’t wait.
🪪 4. Always carry identification
You should carry:
A steroid emergency card (UK standard) and a Medical ID bracelet or necklace
These tell healthcare professionals you need urgent steroids if you’re unwell.
🧳 5. Be prepared (especially important for you)
Given my recent active lifestyle (like Kilimanjaro trips), preparation is key:
Carry extra medication (more than you think you need). Take a hydrocortisone emergency injection kit at all times. Keep meds in hand luggage when travelling. Inform travel companions how to help in an emergency.
Altitude, exertion, and illness can all increase individual cortisol needs.
⚖️ 6. Find your balance (not too much, not too little)
Too little cortisol:
Fatigue, dizziness, weight loss
Too much:
Weight gain Poor sleep Mood changes
Your doctor may adjust your dose over time—this is normal.
🧪 7. Regular monitoring
You’ll likely have:
Blood tests. Reviews with endocrinology and also medication adjustments
This helps keep you stable long-term.
🧠 8. The mental side matters too
Living with adrenal insufficiency can feel:
Unpredictable Anxiety-provoking (especially fear of crisis)
What helps:
Routine Confidence in sick-day rules Education (for you and those around you)
❤️ A perspective that matters
Many people—including cancer survivors like yourself—live full, adventurous lives with adrenal insufficiency.
It’s not about limitation.
It’s about awareness, preparation, and respect for your body’s signals.
🧭 Simple daily checklist
✅ Took medication on time
✅ Feeling well? (energy, appetite, dizziness)
✅ Any illness? → adjust dose
✅ Emergency kit nearby
