Intrepid Tales on Insulin

Type 1 life adventures

The Back Story

kick offYou know the urban myth about patients having their wrong foot amputated?  Well, one day I went to hospital to get an ovarian cyst removed and came home with insulin and needles instead.

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.

11 comments on “The Back Story

  1. njd1insulin

    Apologies that this is far too long a post but I needed to get it out of the way. It feels like a really boring historical story to me now, but I accept that readers need a bit of context. But phew, we can get to the more fun and interesting bits now!

  2. Julie

    “truckload of trial and error”…love it! That’s exactly how I feel. I also totally relate to the bit about actively managing your own healthcare. When I hit menopause (at 35!) I suspected what was going on but my endo at the time was sure I was “lying about being pregnant”. Needless to say, I don’t see him anymore! Oh, I have a lot of history with hormones and insulin management (premature menopause…which is apparently pretty common for T1s) and T1, so looks like we share a bit of that as well.

    • njd1insulin

      Geez, there’s getting it wrong because health is complex and then there’s the arrogant, condescending, deserve to be fired type health care professionals. Well done you for ditching that one! It’s really important to listen to your body and to find HCPs who listen to that listening. I didn’t know about the T1/premature menopause link. Anyway, I’m looking forward to reading more about your trial and error shenanigans on your blog.

  3. twicediabetes

    It’s so irritating that over and over again there’s misdiagnosis and then inappropriate treatment of T1D. Be careful about putting too much pressure on yourself re perfect control, if your beta cells fail completely it makes things harder and you can really burn out and feel discouraged, chasing perfect numbers that’s my 2c for today as a 44 year veteran of diabetes.

    • njd1insulin

      Your copper coin is gratefully received. I know there is an element of myth or even self deception to this notion of control, but playing games in my head seems to help me cope at this relatively newbie stage. I’m definitely a little more relaxed than I was a year or so ago because the ‘imperfect’ measurements on a day-to-day basis are translating to good HBA1cs. It took me a while to understand how things balance out in the grand scheme of things. But the idea of reconfiguring if/when beta cells blow out does not appeal at all!

  4. Rob Mc

    What an extraordinary story. It has been too long Nat. I’ll keep reading.

    • njd1insulin

      Thanks for reading, Rob. I’d love to catch up with you guys (far, far too long) and hang out in your leafy hood. I’ll shoot you an email. xx

  5. Milo

    Have you seen the documentary “Raw for 30 days”, it’s all about diet and diabetes and reversing diabeties. It follows a group of people Type 1 and 2 who are taken on a dietary change that has serious implications….for the better.
    Here’s the website:

    • njd1insulin

      Thanks for the link, Milo. I’ll check it out. I’ve had non-D friends go raw and experience health benefits. To be clear, Type 1 is not reversible or preventable – but it can be well managed. I’d expect that the benefits of raw on blood sugar is more about eating complex wholefoods and less about raw itself. The big thing is the omission of high carbs when you go raw – i.e. no wheat, no potatoes, no rice. So the raw diet is pretty GI stable. Personally, raw is not good for my sluggish digestion. And it’s not something traditional Chinese medicine advocates, as it makes your digestive system have to work harder. But interesting and certainly there are some yum raw options. Oh, the things that can be done with cashews!

      • Milo

        Love cashews! Type 1 may not be as bullet proof as you think. Raw is about increasing the intake of vitamins, minerals and phytonutrients that heat damages or destroys. The clearest and quickest my mind has been has been on a high raw diet 80%+. The question that has come to mind for me is were these medical treatments (including Chinese medicine) developed for a high cooked food population with cooked food problems? Low fat high carb raw vegans are certainly raw and hi carb. Gerson Therapy is also worth researching. All the best for your health

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