Type 1 life adventures
But rather than it being an oops, sorry about the mix up moment, it was a positive instance of finally bumping into a medical professional who sussed a big piece of the puzzle. And as confusing and confronting as that day was, diagnosis of this autoimmune disease proved to be a massive relief.
I’d been misdiagnosed Type 2 about 3 months prior. After consulting the web and ticking every classic symptom box, I’d had to prompt my GP for the test despite being jointly treated by him and a naturopath for yonks to try and eradicate candida overgrowth (which turns out to be a symptom of poorly controlled diabetes). Given digestive issues and symptoms, candida was initially assumed responsible for my constant ill-health, depression and lethargy. I was anaemic and getting iron injections that made little difference in elevating my levels. Vitamin D was deficient. Thyroid was on the edge. I always seemed to be getting prolonged colds.
My GP suggested I work hard on my diet and exercise and then we’d review in three months whether I needed medication. No further tests were done. It was simply assumed that because I was older (37 at the time) I must be Type 2. I didn’t know enough to ask the right questions. I was confused though because as many people commented, I was not stereotypically Type 2. I felt like I should blame myself for not exactly having been health or diet conscious across my life.
But as that GP knew, I’d already modified my diet radically in the year prior and had introduced a wholefoods approach, ditching the processed stuff that fills supermarket shelves and family pantries. I started gravitating towards a more diverse range of foods including some I’d never heard of before like quinoa or buckwheat. My mate Dan referred to this Candida elimination period as the Taliban diet – a strictly adhered to regime of no tea, coffee, wheat, dairy, alcohol sugar etc. I lost weight during this period, which I attributed to eating well even though I was eating loads. My tastebuds and cooking style changed.
I was certainly feeling better than I had for some time, with fewer debilitating headaches, but I was still not gold star.
The candida elimination process works in stages. You start by obliterating the bacteria, then shift to rebuilding your digestive and immune system. Having taken the prescribed anti-fungal for over six months I graduated myself to Maca powder, which is renowned for boosting energy. Aagh, yes but that’s because it plays around with your hormones, which I had not fully comprehended. I guess I fell for the ‘it’s natural’ so ‘it’s good for you’ thinking. After taking it for a few months it made me scarily haemorrhage and I was issued progesterone to quell the subsequent six weeks of uterine bleeding.
But this episode led to the discovery of endometriosis, which eventually took me to the hospital, and introduced me to the methodical anaesthetist who refused to dose me for the operation that morning because my sugar levels were out of control and she insisted I be tested for Type 1 (tick). So it all serves a purpose in the bigger health narrative, I suppose.
There were a couple of blurry weeks testing insulin types and scaling dosages. Health services seemed to throw blood glucose meters at me like they were a consolation prize. I put on 8kg in five weeks, which was totally disconcerting, more for the pace at which it happened. I was diligent in writing down every measurement and dosage and seemed to be getting the hang of it. Pretty soon my hair stopped falling out, there were no more hideous foot cramps that woke me overnight, cuts healed, thrush diminished, I got colour in my face, my periods halved and I peed less often.
In retrospect I think I was fortunate in that I’d already laid the groundwork for making lifestyle changes and was a bit older. By that point I was actively interested in being well and my body’s responsiveness to insulin motivated me to keep at the hard slog of managing this new regime. It wasn’t easy. There was a truckload of trial and error (still is). But I think my partial disposition as a process-organiser type helped me to project manage my health and try to understand everything. I read heaps to get informed and became my own little experiment. If I had to cop an auto-immune disease, I suppose this was the one for me because I felt like I could control it (though admittedly the constant effort or pressure on myself to do so can backfire).
Pathology results early on included archives from tests three years prior that I’d never been privy to. I clearly remembered that GP from the generic 24 hour clinic I’d gone to see about my tiredness. He commented that my result was a bit high, but dismissed it because I must have just eaten when tested. Now I understand that the result was a definitive signal and I should have been diagnosed earlier.
All of this has made me more active in assuming responsibility for my own health, and in working with practitioners who support my approach.
I’d hoped that once taking insulin and eventually having the cyst removed that my periods and iron levels would adjust, but this turned out to not be the case with iron. Gut and malabsorption issues persist. I’ve been reluctant to accept the lazy umbrella term IBS. Despite having the gene and autoimmune correlators, Coeliac disease and anything more sinister were ruled out with scopes earlier this year (only erosive gastritis was found). I do know I react to certain types of food and the FODMAP analysis is helping me pinpoint them. But it seems to be that Chinese Medicine bitter herbs are helping me most by addressing underlying issues systemically, rather than in isolated bits and pieces.
Glandular fever, which I had in my 20s, has been implicated as one possible environmental trigger for auto-immune illnesses, such as Type 1. So has low Vitamin D. So many chicken-egg possibilities. But there is a lot of interesting inquiry into guts, immunity and the idea of the stomach as our second brain and producer of serotonin. I feel in my guts that this is the key to my well-being and finding those last bits of the puzzle. My systems have been stagnating and struggling for years. So they need help to re-energise. Herbs are one way but also critical is finding attitudes and activities to invigorate my mind-body energy as well. Because it’s all undoubtedly interrelated.
I’ve been honeymooning now for 2.5 years, which means some of my pancreatic cells that produce insulin are still alive. By looking after myself they keep hanging on, though if you ask the medical profession most will say it is inevitable that they will all cark it one day and I’ll have to reconfigure things. All I know is I don’t want to be lined up for a foot amputation (which is a possible long-term diabetic complication). Just in case someone does get the left-right thing befuddled.