Understanding Your Condition and Treatment Plan
What You Have
You have been diagnosed with three separate but related conditions that need to be managed together:
Secondary adrenal insufficiency - Your pituitary gland isn't making enough of the hormone (ACTH) that tells your adrenal glands to produce cortisol, a critical stress hormone your body needs to function 1, 2
Hyperferritinemia - You have too much iron stored in your body
Metabolic syndrome - A cluster of conditions including high blood pressure, high blood sugar, excess body fat around the waist, and abnormal cholesterol levels
Why This Matters
Your adrenal insufficiency is the most serious and life-threatening condition that requires immediate and ongoing treatment 1. Without proper treatment, you are at risk of an "adrenal crisis" - a medical emergency that can be fatal 1. People with adrenal insufficiency have 2-3 times higher risk of death compared to the general population, mainly from heart disease, infections, and cancer 1.
Your Daily Medications
Hydrocortisone (Stress Hormone Replacement)
- You will take hydrocortisone 15-25 mg total per day, split into 2-3 doses 3, 4
- A typical schedule is: 10 mg when you wake up, 5 mg at noon, and 2.5-5 mg in late afternoon 3
- This medication replaces the cortisol your body cannot make on its own 5
- You must take this medication every single day for the rest of your life - missing doses can be life-threatening 1, 3
What to Watch For
Signs you're taking too much hydrocortisone 6:
- Weight gain (the earliest warning sign)
- Trouble sleeping, especially if you take your last dose too late in the day
- Swelling in your feet and ankles
Signs you're taking too little 3:
- Extreme tiredness
- Nausea and poor appetite, especially in the morning
- Weight loss
- Feeling lightheaded when standing up
- Craving salty foods
Critical Safety Information
When You're Sick or Stressed
You MUST increase your hydrocortisone dose during illness or stress 3, 4:
- Minor illness (cold, flu, fever): Double your usual dose
- Severe illness (high fever, vomiting, diarrhea): Triple your usual dose
- If you're vomiting and can't keep pills down: Go to the emergency room immediately - you need IV medication 3
Emergency Situations - Adrenal Crisis
Call 911 or go to the emergency room immediately if you have 1, 2:
- Severe vomiting or diarrhea
- Confusion or extreme weakness
- Very low blood pressure or fainting
- Severe abdominal pain
An adrenal crisis can kill you within hours if not treated 1. This happens in 6-8 out of every 100 patients with adrenal insufficiency each year 1.
Before Surgery or Medical Procedures
Tell every doctor, dentist, and healthcare provider that you have adrenal insufficiency 1, 3. You will need much higher doses of hydrocortisone before, during, and after any surgery or procedure 1. For major surgery, you'll receive 100 mg of hydrocortisone IV at the start, followed by a continuous infusion 1.
Essential Safety Measures
Wear a medical alert bracelet or necklace at all times stating you have adrenal insufficiency 3
Carry a steroid emergency card in your wallet 3
Keep an emergency injection kit with you and teach family members how to use it 3
Never run out of medication - always refill prescriptions early 3
Avoid people with infections when possible, as infections are the most common trigger for adrenal crisis 1
Managing Your Other Conditions
Metabolic Syndrome
Your metabolic syndrome (high blood pressure, blood sugar problems, weight issues) may actually be made worse by taking too much hydrocortisone 7, 8. This is why finding the right dose is so important - enough to keep you safe, but not so much that it causes other problems 6, 8.
Work with your doctor to 7:
- Monitor your weight closely (sudden weight gain means too much medication)
- Check blood pressure regularly
- Test blood sugar levels
- Follow a heart-healthy diet
- Exercise as tolerated
Hyperferritinemia (High Iron)
Your doctor will monitor your iron levels and may recommend treatments to reduce iron if needed. This is managed separately from your adrenal insufficiency.
Important Warnings
- Never stop taking hydrocortisone suddenly - this can trigger a life-threatening crisis 5
- Avoid grapefruit juice - it can increase hydrocortisone levels in your blood 3
- Tell your doctor before taking any new medications, including over-the-counter drugs, as some can interfere with your treatment 3, 5
- If you're exposed to chickenpox or measles, contact your doctor immediately, as your immune system may be suppressed 5
Follow-Up Care
You will need regular monitoring 3:
- Blood tests to check electrolytes (sodium and potassium) at least yearly
- Screening for other autoimmune conditions, especially thyroid problems
- Bone density scans every 3-5 years to check for bone thinning
- Regular weight and blood pressure checks
Questions to Ask Your Doctor
- What is my exact hydrocortisone dosing schedule?
- When should I double or triple my dose?
- Do I have an emergency injection kit, and has someone shown me how to use it?
- What are my target blood pressure and blood sugar levels?
- How often do I need follow-up appointments?
Remember: Adrenal insufficiency is serious but manageable with proper treatment and vigilance 3, 4. The key is never missing doses, adjusting for illness, and seeking immediate help if you develop severe symptoms 1, 2.