The story of Kim
My journey with autoimmune primary adrenal insufficiency (Addison’s disease) began more than half a lifetime ago, when I was about 19. As a result, many of my memories aren’t exactly clear, due to both the passing of time, and the state I was in. In hindsight, I’m able to see several instances where AD (Addison’s disease) reared its ugly head prior to diagnosis. A couple of times I became unwell with a cold or virus, and it really wiped me out, taking me a lot longer than usual to recover. Another time I was at work alone and within a matter of 1 or 2 minutes I went from being fine, to being so exhausted I could barely summon the energy to speak or get help. I somehow managed to alert a coworker, go home (I lived on site) and crawl into bed. I shudder to think what could have happened, but I was lucky enough to wake up and recover well each time. I know others have not been so lucky, both before and after diagnosis.
During this timeframe, I went on a summer beach holiday. I got an awesome tan and was elated to discover it didn’t fade. Several months later, I still had it. It would turn out to be the key to my diagnosis.
Fast forward about a year or so, and I again fell ill with a bug of some sort. It knocked me around to the point I spent days on a mattress on the floor doing nothing but sleeping on and off. I only left the room to literally crawl to the toilet as I had no energy to stand. I had an incredibly sore throat, and as a result was not eating or drinking. I eventually got taken to emergency at the local country hospital, where I was given a shot in my butt and sent home without a diagnosis beyond a “virus”. I resumed my “life” on the mattress until it was decided I need to go back to hospital. This time I was admitted. I remember having a conversation about buying supplies for hospital, and being confused about the time of day. I was convinced it was night, when it was obviously daytime.
I don’t recall how long I stayed in hospital, but I do remember not much being done in the way of testing. I also recall being weighed, and the nurse warning me that I’d better start eating so I could put on weight as the doctors were thinking I may have anorexia. Of course, I fit the bill – young, female, thin and not eating – it would have been the “easy” diagnosis. I shudder to think what would have happened if I got sent to the psysch ward. Growing up, I had always been a healthy weight. However, during my hospital stay I got down to 45kg/99lbs (I’m 164cm/5’4”). Google tells me the healthy weight range for a woman of my height is 54-67kg.
Thankfully, I started to recover from whatever ailment I had and began to eat & gain weight. I was discharged, again without a diagnosis of any kind. For a short time I was OK, but again had severe lethargy. I recall hand washing dishes in the kitchen, sitting on a chair because standing was too much. I could only manage one dish at a time, and would have to lie on the couch until I felt I could handle washing another one. This period of recovery, then absolute lethargy, continued. It was decided I’d come to the city and stay with my parents for a while so they could look after me.
I don’t recall how long I stayed with them, (again living on the couch, doing nothing but dozing on and off) but things came to a head when my parents decided I needed medical attention again. A locum doctor was called as it was after hours and my parents don’t drive. My blood pressure was so low he couldn’t get a reading. He also asked me to walk to the corner of the room, maybe 3 metres away (almost 10 feet). It felt impossible, like he’s just asked me to climb Mt Everest. It was decided I needed the hospital, so a taxi was called.
The hospital was fantastic, taking me back to a cubicle as soon as we got there. They were very thorough in their testing and I spent all night being poked and prodded, then being admitted the following morning. At some point, a nephrologist noticed my wonderful tan, put 2 and 2 together, and ordered the ACTH stim test. If it weren’t for this pigmentation, I’d no doubt be stuck in the lethargy/recovery mode until something incredibly dire occurred. I’m acutely aware that others have not been as lucky as I was, and I feel I owe my life to this professor. Despite using a butterfly needle for the stim test, it was incredibly painful, no doubt due to my dehydrated system and poor veins. I don’t know what the numbers were, except that I clearly failed. I was put on a large dose of cortisone acetate, as the thinking at this time was to over replace to be sure the patient is covered, then wean down. This caused me to put on 19kg/42lbs within 3 months, making me overweight for the first time in my life. This contributed to my already existing low self esteem, and I have struggled with my weight/confidence ever since.
Since diagnosis, I have gone on to marry, have 2 children via c-section who were both breastfed, travel, work, play sport and maintain a relatively normal life. I am now on hydrocortisone 3 times a day (8/8/4) and 1 fludrocortisone tablet. Along the way my low blood pressure has slowly crept up, to the point I’m now taking 2 medications to control it. Within the last few years I’ve gained another autoimmune disease – Hashimoto’ thyroiditis, and also discovered I have a clotting disorder. Otherwise, I’m living a relatively normal life and have remained crisis free since diagnosis. It hasn’t ruled my life, and I’m thankful that I can mostly forget I have it. I like to be able to encourage others who feel this disease is a horrific life sentence. It’s always good to know there’s a light at the end of the tunnel, especially when that tunnel has been incredibly long and harrowing.
Kim – Victoria, Australia
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