Updated 15 November 2018

'How my misdiagnosed type 1 diabetes nearly killed me'

A Cape Town woman tells us how a misdiagnosis nearly killed her, and how challenging it is to manage her type 1 diabetes.

"I remember it to the date. It was 21 July 2013 and I was meant to go to a wedding, but I really wasn't feeling well. My husband had to go on his own – it was a family wedding, so he couldn't not go.

"When he got home, he was upset that I hadn't done the basics, like the laundry, but I felt lethargic and fatigued, I couldn't bring myself to being on my feet for lengthy periods of time. Little did I know that my body was basically in the process of shutting down.

"My husband didn't like the route I was going and rushed me to the closest emergency room (ER), and while he was trying to have someone see me, I was busy passing out on the chair.

'So, while I was busy dying, they were refusing to treat me.'

"Unfortunately, it was a private hospital and it turns out that this ER refused to treat anyone without upfront payment. So, while I was busy dying, they were refusing to treat me. Seeing that we're not on medical aid, my husband managed to secure funds and they finally examined me.

"Everything was a blur – I don't remember much about my time in the ER, except that one of the nurses asked my husband 'How long has your wife been diabetic?' because I was slipping into a diabetic coma, also known as diabetic ketoacidosis (DKA).

"This was news for us. Prior to finding out that I was, in fact, diabetic, I had suffered all the symptoms, but the possibility of type 1 diabetes never crossed my mind. I never knew these were signs I needed to be on the lookout for.

"I had lost an enormous amount of weight, I was constantly thirsty, I kept needing to go to the bathroom, I was fatigued, I seriously lacked concentration, my muscles were stiff and my body ached. So, I went for acupuncture and the acupuncturist said I might have a thyroid problem of some sort.

Changing my lifestyle

"Going back to my ER experience... After being examined, I was packaged and transferred by ambulance to Groote Schuur Hospital (GSH). At this stage, I was cold and delirious. I was hallucinating – I asked my husband to open a bottle of water for me because the lid was on too tight, but there was no bottle of water. I also asked that the ambulance 'be made softer'.

"When I was at GSH, I was in high care for about three days, I had drips in both my arms, but I was freezing. Eventually, they had to tie my arms down to prevent me from curling up into a ball in an attempt to generate heat and bending yet another set of needles.

"After spending about a week in hospital, the diabetic nurse at GSH had to teach me how I basically needed to change my lifestyle. She taught me how to test my sugar, how to inject my insulin, how I should be eating and all the rest that goes with it.

"I was angry and upset. I now had this condition that I had to live with for the rest of my life. I wished it was something that I could take a bunch of tablets for and it would be gone.

"I wished I didn't have to go for my HbA1c (glycosylated haemoglobin) test every three months, but this test is necessary to test how blood glucose is being managed. Given the fact that our public health system is incredibly overwhelmed, I'm only able to go every six months.

"If your HbA1c test is higher than 7, it's dangerous because your organs could become permanently damaged by your high HbA1c levels. The last time I went, mine was high.

Why is 'healthy food' so expensive?

"Managing my sugar has become increasingly difficult, but I had no problem managing it when I was pregnant, and here I must commend the amazing doctors at GSH who made sure I was as healthy as I could be, and when my baby was born, that he was healthy too.

"I was incredibly selfish when I was pregnant – I had to be healthy for my growing baby. I ate as healthily as I could, I was accurate and on time with my insulin. Now, it's hard because I need to provide for my family, which is frustrating because, while I know that I need to take care of myself, I also need to feed my family.

"Healthy food is expensive and it's hard for me to buy something specific for me to eat, and extra food for my family as well. I need the food I buy to go further than just me. It's a massive problem.

"I've started growing my own vegetables in my garden, but that isn't the solution to this problem, because it doesn't always work out, but coupled with that, there are thousands of people out there who aren't able to afford doing something like that.

"I wouldn't wish on anyone what I went through — finding out that I have type 1 diabetes they way I did — and as difficult as it may be to find out that you have a condition like this, and as challenging as it may be to manage, I encourage people to educate themselves as much as possible.

"If you have the tiniest suspicion that you might have something as life-changing as type 1 diabetes, do what you need to do to find out. Be selfish. Take the time and sit at a clinic from ungodly hours of the morning if you must, but rather be sure than find yourself in the position I found myself in more than five years ago."

– Stacey

Image credit: iStock


Ask the Expert

Diabetes expert

Dr. May currently works as a fulltime endocrinologist and has been in private practice since 2004. He has a variety of interests, predominantly obesity and diabetes, but also sees patients with osteoporosis, thyroid disorders, men's health disorders, pituitary and adrenal disorders, polycystic ovaries, and disorders of growth. He is a leading member of several obesity and diabetes societies and runs a trial centre for new drugs.

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