Addison’s disease: One year post-diagnosis
Thirteen months have elapsed since my diagnosis of Addison’s disease by ACTH-stimulated cortisol testing. I wanted to update my Adrenalog, because many people arrive at my blog from Addison’s searches, and the posts there reflect my early experiences with diagnosis and coping with adrenal failure. I thought it might be helpful to recount what has changed, and what hasn’t.
I still have days when I am positive that my pharmacist loaded my hydrocortisone bottle with placebo tablets. I’m drained, fatigued for no reason, can’t stand up for long, speaking is exhausting. But these days occur very seldom: maybe once every three or four weeks.
I tend to feel more tired on Sundays, just because I am necessarily around more people in church than I am around any other time, and I’m simply more tired around other people than I am at home alone or with my husband. My Sunday morning routine is more crunched than other days of the week, which leads to stress, which probably leads to more rapid depletion of the synthetic cortisol. For working people, Monday might be their crunch day; for me, Sundays are my most stressful days. Stress comes with the best as well as the worst of life’s dealings.
I have read that cortisol is involved in glycogen storage. Strenuous activity will cause me to bonk and get leg cramps, just as I used to experience 10 years ago after riding my bike 100 miles. Now, “strenuous activity” would be a three-mile walk.
Cortisol regulates metabolism of fat, carbohydrates, and protein. My metabolism on 25-30 mg a day of hydrocortisone remains compromised. I have constant heartburn, GERD, and frequent colitis. It doesn’t matter what I eat or don’t eat. I’ve given up everything and reintroduced foods to try to isolate hostile ones. I isolated oatmeal as a culprit, and eliminating it completely has improved the colitis.
I gave up all caffeine for most of a year, thinking it would overactivate my adrenals and require more cortisone to mitigate the adrenal response, but this was not the case. There is no medical evidence for this at all, and my endocrinologist assured me that my response to coffee should be just like anyone else’s. Caffeine helps me to stay awake during the day, it promotes glycogen replenishment, and it makes me happy to prepare and drink coffee. As long as I drink my last cup before 4 p.m., it has no effect on my ability to sleep at night.
I read a lot of accounts of people with Addison’s who testify to a complete resumption of their normal life once they’re on hydrocortisone. Good for them. These people, I have noticed, tend to be younger–i.e., under 40– when diagnosed. I was in my 50s. I was already living within the limits of fibromyalgia and arthritis.
Life is normal with reference to my former limits, but not quite the same. Being around people for very long wears me out more than it used to. Exercise is nine parts concession to one part joy, where it used to be more like two parts concession to eight parts joy. Addison’s hasn’t exactly been a stiff breeze to my sails.
When I became acutely ill before my diagnosis last year, I could not walk the length of my house without holding on to furniture along the way. Now I can walk briskly for nearly an hour. That is certainly objective improvement. I still can’t drive longer than about 30 minutes without becoming fatigued and tense.
I still get occasional migraines, but not the daily all-day ones I had two years before my diagnosis. Those might have been related to estrogen depletion, or possibly to early fluctuations in cortisol. No cause was ever found, and I get relief now from Maxalt, while there was sometimes no relief before.
Muscle weakness and fatigue remains a problem, but with less severity on cortisone. My glucose swings remain interesting: I can go from 55 to 160 in two hours, without eating any sugar. Carbs, especially pasta, cause a pretty steep spike. Pasta also brings on quick and deep fatigue, but there are so few filling things I can eat without worse symptoms that I haven’t eliminated it. My blood pressure is great, typically in the 90s or low 100s over 50s or 60s. I hate to think how low it would be without cortisone.
My blood tests have been reassuring. I no longer have high eosiniphils, but now have high neutrophils and low lymphocytes. We’re watching those; my doctor isn’t persuaded yet that they necessarily mean compromised immunity, but crowds and public transit aren’t a good idea, which is fine with me. My thyroid is low-end of normal, but the operative word is normal. No other endocrine variables appear to be failing. I count myself fortunate that the cortisol zones of my adrenal cortices were my immune system’s only target for destruction. My aldosterone production was not affected, and my sodium and potassium levels are normal.
In my case, Addison’s disease isn’t really very complicated. I sort of lose interest in it and just take the little pills in the morning, afternoon if I need to, and evening. I take life as it comes: with limits.
I had limits with fibromyalgia, but still managed to ride my bike across Washington state in 1998 and enter 15 racewalking races all over Montana in 1991. True, I’m older now, but older people than I still do those things. I no longer have the energy, and I don’t have the nerve to venture too far from home. I worry about getting too tired to get back.
I walk an hour most days on my treadmill. It’s one hour I can read without conking out. My good muscle tone belies the persistent weakness in my muscles.
Before I got on hydrocortisone last year, I knew I was dying. Once treated, Addison’s isn’t the end of life, or anywhere close. But it isn’t exactly the renaissance of vitality, either.
From my own experience, which is all anyone really has, and from the stupidly thoughtless things other people with Addison’s have told me I should be experiencing, and the thoughtful and meaningful things still others with Addison’s have told me, and from accounts I’ve read, I would venture to posit that the younger you are when diagnosed and treated, the more vital you are likely to be in spite of the disease. I think the older you are when diagnosed and treated, the more limited your vitality might be. At least that’s my excuse for not being girl barrel jumper with two day jobs, travel plans, and an eventful social life.