Diabetes NZ volunteer Grace Wyatt shares her type 2 story.

I burst into tears. It was February 2019, and my new doctor had just told me that I had type 2 diabetes. I’d been aware of the probability for many years but had hoped to avoid the family trap I’d inherited – and the medical predisposition I have as the result of surgery. 

With the help of tissues and careful handling by this new doctor, I got over myself, and we discussed the situation. I wanted to try and reverse my HbA1c, and she was reluctant to put me on medications immediately, so she readily agreed. I was sceptical about reversing the diagnosis, but, for reasons I’ll go into soon, I was more suspicious of diabetic medications.

We talked about what I could do to help myself. I subsequently found out that this was something that should have been discussed, in depth, with me at least three years previously. Apparently, I had been prediabetic without knowing it. I’d been concerned about my slow weight gain for many years but could not seem to shift it, and although I was told to lose weight in 2018, I don’t remember being told I had insulin resistance, or that I had pre-diabetes, or what either of them meant.  

In 2019, my new doctor and I talked about how I could lose weight and continue doing exercise as, at 65, I was already walking 5–6 km a day. (I still do.)

She’d read my notes and knew that I am prone to anxiety and raised stress levels. She was purposefully laid back about the situation as we have since discussed. To be fair, I also think this may have been why my previous doctor, knowing my family and medical history and my tendency to anxiety, had not been specific. However, that was the very reason I needed to have been told and supported, to avoid what I was now facing. Maybe there had been an assumption that I already knew, given my family experience, or maybe there was miscommunication on both sides. In any case, I’d already proven that I prefer to meet medical crises head-on.

A RARE METFORMIN ALLERGY

My background is one of genetic predisposition for late onset type 2 diabetes, which my maternal grandmother and mother, sister, many first cousins, paternal aunties, cousins, half-brother, and halfsister also have.

The spectre of this disease had been hanging over me since 2007 when my sister suffered major organ failure as a result of a 1-in10,000 severe allergic reaction to metformin. She came out of a week-long coma and a lengthy stay in hospital with her body having aged 20 years and only 3% kidney function. Over the next seven years, this only returned to 17%. She went blind, had heart failure, and lost her mobility. Her quality of life was severely impaired until she died after developing gangrene in 2014.

My mother and my niece also experienced allergic reactions to metformin, though not to the same degree. When my sister died at 57 as a result of the above complications, the medical team advised that all our family and children needed our medical records red-flagged for metformin allergy. 

My other sister has been prediabetic for many years. Most of the maternal-side diabetics suffer obesity, varying from not too bad to morbidly obese. Most of the paternal-side sufferers also suffer degrees of obesity, but not my halfsiblings, despite their diagnoses. In 2019, I was in the lower end of the obese category at 162cm tall, 80kg, and with a BMI of 30.5.

Added to all these hereditary factors, I’d had a rare kind of surgery.

ADDED CHALLENGES

In 2008, I had a pancreaticoduodenectomy and cholecystectomy (Whipple’s procedure) for an ampullary tumour. It means I no longer have a duodenum or gall bladder and only have two-thirds of my pancreas. A radical operation was, then, the only solution for this tumour – and usually these operations are palliative measures. I knew the mortality rates and other statistics for the operation were, frankly, scary, but as I said, I prefer to meet medical problems head on.

I opted not to share the scariest possibilities with my family: I’d already decided that it was going to be a success, as I had too much to live for.  Before the operation, I would drive to work each day, tears pouring down my face, listening to inspirational music and giving myself pep talks. “I am not going anywhere. I can do this. I want to see my grandbabies grow up. I want to see my children well into their adult lives. I will make this work.”

One of the things I knew was a very real possibility was that I could come out of the operation an insulin-dependent diabetic. Fortunately, that did not happen. Another probability was that I would lose weight drastically and have trouble maintaining enough weight. Some hope!

After a month on a feeding tube and six months of severely restricted food intake directly after the operation, I got down to 66kg, at which point my very supportive GP and specialists hastened to halt the weight loss. Over the next 11 years, I slowly gained weight for no apparent reason until I reached 80kg at my heaviest and really struggled to keep from going higher. 

Having no duodenum affects how, and if, certain nutrients are absorbed by my body, so I have to take supplements. Another effect is having some of the symptoms of both Dumping Syndrome and Short Bowel Syndrome. These occur intermittently and without warning, meaning I always need to know where to find the nearest toilet. I also get severe intestinal spasms, severe leg cramps, irritable leg syndrome, and random other areas of muscle spasm. All of these I attribute to a lack of nutrient absorption caused by not having a duodenum. 

I have acid reflux and control it with medication as well as being very careful what I eat and when. For example, I cannot eat a meal after 7pm. Despite all of this, as well as maintaining a very active lifestyle, walking, kayaking, swimming, travelling around the world, and hiking the Milford and Rakiura Tracks, I’d still gained weight.

DIFFICULT DIET CHANGES

After my type 2 diagnosis, I knew I had to lose at least 10kg. I had a good understanding of nutrition but conflicting advice over the years had confused some of my understanding. 

Although I’ve always eaten a healthy diet, I didn’t know about hidden carbohydrates and this proved to be my problem. I’d never indulged in soft drinks, sweets, or pastries and had kept to low-GI foods, but I discovered even the most innocuous carbohydrate can have a big effect on my blood glucose levels. 

After a couple of months struggling to make a difference, I asked to be referred back to the dietitian who’d helped me after the Whipple’s procedure.

Adjusting eating habits means a complete change of lifestyle, and it’s often touted (in media and by professionals) as easy to do. Not so. There is a high level of learning and change of long-established habits required. This needs to be acknowledged.

For eight months, I struggled. I severely restricted my diet, getting my HbA1c down from 63 to 46 and my weight down to 68kg. Much of that time was spent feeling unwell and fatigued. 

I read and attended seminars about carbohydrates, LCHF (Low Carb High Fat), and Keto lifestyles and consulted with my dietitian. I needed to be able to keep my carbs low enough to stabilise my blood glucose. To do this and maintain energy, I needed to increase my fat intake, which can be problematic when you do not have a gallbladder. I also needed to make sure I was getting the right kinds of nutrients, given my inability to absorb some of them. Diving in ‘boots and all’ to any one type of diet is not an option for me. It is a very difficult balancing act, and I am determined it will not dominate my life – although the only way I can maintain control is to keep a daily food diary, which is onerous.

My HbA1c has fluctuated several times, and, in October 2020, my doctor suggested I try the Libre FGM to get more information about how different foods affect my blood glucose levels. I’m lucky that I can afford the monitor. It costs $203 per month but is so worthwhile. It shows exactly what has happened since the last scan and is invaluable for helping me identify what my body does with certain foods. Along with my food diaries, I can now get a complete picture, allowing me more control.  

IMPROVING THE HEALTH SYSTEM

My first, and only, visit to the DHB Diabetic Clinic included a diabetic retinopathy check and a consultation with a specialist. My doctor’s first referral had been rejected and the second only accepted by her specific detailing of my medical history. While everyone congratulated me on reducing my HbA1c, I felt that my history was not taken seriously and that, because of my good result at that time, I was cast adrift and discharged.

I do understand that there is a type 2 diabetes epidemic and there are many people in more dire need of medical care for their diabetes than me, but we should be putting the ambulance at the top of the cliff instead of waiting for everyone to fall to the bottom then blaming them for it. 

Education about early warning signs of type 2 diabetes needs to be better. People with pre-diabetes need to understand why it is crucial to take it seriously, and they need support to avoid developing diabetes. Funding for sensors before being put on medication would save millions of dollars on medications and treatment of complications.

I don’t think I have full understanding of diabetes yet, but I do know that, once diagnosed with diabetes, even if you can reverse it, you still have it. If you relax for a second, it will rear its head again. The best thing to aim for is to tame the beast in a sustainable way for as long as you can.

I have been pro-active, but it continues to be a struggle. Early on, I contacted Diabetes NZ to find out if there were support groups. I found one in my area and also found we had a Field Officer. I promptly made an appointment to see her. She was so helpful, and her specific science background allowed her to understand the full implications of my case. She continues to be a support although now retired. And there is now a new Diabetes Community Coordinator here.

Attending my first support group meeting was a bit nerve-wracking as I expected to be confronted by very sick people – my experience up to that point. I found, instead, a group of people with type 1 and type 2, all living well with diabetes, albeit differently. What a relief.

I’ve begun to volunteer at various events, and talking to the public has made me realise the vast array of ways in which people with type 2 are treated. There doesn’t seem to be consistency in the criteria for being diagnosed with pre-diabetes or diabetes, nor any consistency in when people are put on, or taken off, medication. Most people I speak to don’t fully understand their condition or their treatment and have not had the right support through their journey.

People with diabetes and medical professionals need to understand that everyone’s bodies deal with diabetes differently. It's important that we feel empowered to say to our healthcare professionals: ‘We’re in this together. I’m trusting you with my body – I can’t do this on my own.’