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Hilary's Journey

My support groups have taught me almost everything I’ve learned about how to live with adrenal insufficiency.

When I was first diagnosed with the disease, my endocrinologist told me to take my entire daily dose of hydrocortisone at 8am in the morning, to put a steroid card in my wallet, and to keep an injection of hydrocortisone in my handbag. When I asked how to administer the injection, she said: “Oh just go on YouTube. I'm sure you can find a video of how to do it on there.”  And that was it.

Within days, I felt awful. I was lethargic and out-of-it in the afternoons and evenings. I began having heart palpitations. My hair fell out. I gained weight. Rosacea bloomed across my cheeks. I was so out of it that one day I found myself standing in the cold locked out of our apartment building because I couldn’t remember the entry code.

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What my support groups taught me about managing my adrenal insufficiency

I was desperate to figure out why I felt so awful. When I finally went online and found the Addison’s Disease Self-Help Group (ADSHG) and Adrenal Insufficiency United, I was overwhelmed by their fantastic resources. I spent days poring over the information and piecing together the five-point framework that has since formed the basis of how I manage my condition.

1. Spread my dose throughout the day: I learned that hydrocortisone is metabolized quickly and wears off after a few hours which is why you have to spread your daily dose throughout the day to mimic your body’s natural circadian rhythm of cortisol production.
2. Updose on sick days: I still can’t believe no one told me I needed to updose when I was sick, during surgery, and in times of major stress. I found ADSHG’s excellent sick day guide in the nick of time because my son had just been born and when he went to nursery, we got every virus under the sun - gastro bugs, strep throat, pink eye, hand and mouth disease, covid, RSV, you name it—so I had plenty of time to practice updosing!  
3. Manage my weight: Within the first few months of developing adrenal insufficiency, I gained eight kilograms I haven’t been able to shed since no matter how well I eat or how much I exercise. I learned that this is because taking steroids changes how we metabolize carbohydrates and, much like with diabetes, that I can keep from gaining even more weight by eating fewer carbs and fasting intermittently. I try to do both as often as I can though the carbs are a daily challenge (I do live in France, after all!)
4. Supplement minerals and vitamins: As I learned more about all the ways adrenal insufficiency can affect the body, I got more comprehensive bloodwork done and discovered my sodium, DHEA, electrolytes, vitamin D, and zinc were all low. I started supplementing those and taking calcium, too, after I learned steroids can cause osteoporosis over time.
5. Screen for potential complications: In addition to osteoporosis, steroids can cause cataracts, so I set up regular bone and eye scans through my GP. My support groups even helped me get rid of the steroid-induced rosacea that had so stubbornly made my cheeks red and inflamed for years. After I posted about it, someone commented that they’d gotten rid of theirs with a cream called Soolantra. My GP had never heard of it, but she wrote me a prescription anyway and sure enough, within less than a week of using it, my cheeks were clear. 

Speak with others

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I’m not alone

For five years now, I’ve seen thousands of people flood into my online support groups with almost no knowledge of how to manage their condition. I’ve seen them slowly learn everything above just like I did—by going through the archives and asking questions.

Many of these people have never been given a steroid card or injection kit or been told to get a medical ID bracelet. And many have never learned how to divide their daily dose or when to updose. Fortunately, we have groups like ADSHG that not only help us find this information but provide resources and training for patients, endocrinologists, nurses, surgeons, primary care doctors, paramedics, and A&E professionals. 

They are able to promote the 'expert voice' of the Addison's and adrenal insufficiency community to healthcare professionals, for better understanding of the challenges of living with a rare disease.

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Here we ask Hilary our most asked "Addison's Admin" questions here at ADSHG!

How do you remember to take your tablets? I set up alerts on my phone for the four times throughout the day when I take my dose.  

How do you carry your injection kit? I keep my injection kit in my handbag which I bring everywhere.

What type of medical alert identification do you have? I wear a medical ID bracelet that says ‘adrenal insufficiency, steroid dependent’ and has my husband’s phone number.

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