What leaves me utterly disgusted with my medical treatment is that all the symptoms which my doctors ignored or told me I did not have were correctly identified by non-medically-trained lay people. For example, a diabetic colleague suggested I might be diabetic back in 1980 – which my GP denied. A friend who knew my diet really well suggested I might be wheat intolerant. Well technically I’m not coeliac or gluten intolerant but wheat majorly spikes my glucose level. My then GP wrote that I had “fanciful notions”. Many people, not only diabetics, have specific problems with wheat, probably as a result of the lectin content as much as the gluten.
I diagnosed my gallstones myself simply by comparing my symptoms to those of friends and colleagues and discovering they mostly matched those of people with gallstones and mostly did not match those of people with other conditions. Yet it took five more years of suffering and denial from my GP before I had the damn things removed.
Now admittedly skinny Type 2s may not be that common – but thanks to my late aunt’s genealogical work I know that one specific line of my family is riddled with “metabolic syndrome” and Type 2, mainly in non-obese people, so there is obviously some genetic factor involving insulin resistance. This is probably commoner than believed in the population as a whole, over time I have met numerous other sufferers via the internet, none of whom I am related to (as far as I know). I’ve read estimates that up to 20% of Type 2s are non-obese (frankly I’d take any number as an underestimate since diabetes is only associated in the media and much medical literature with overweight, so we are likely to go undiagnosed just as I did). This is actually about twice the incidence of Type 1.
Two other non-facts which are widely believed are that Type 2 is a result of obesity, when the corollary is that about 80% of obese people are nondiabetic, and that Type 2 does not exist in children. Yet again I know a small but significant number of individuals who have had symptoms going back to their early years, especially reactive hypoglycemia. One such discovered she had failed a GTT in childhood but was never told she was diabetic until after her first heart attack.
The third non-fact is that only children get Type 1, and this can be truly tragic. Again some statistics suggest LADA (adult onset Type 1) actually outnumbers childhood-onset by about 2:1, and because the time from normal to “die without insulin” can be prolonged in LADA there are many horror stories of people disintegrating slowly while being assured they are actually Type 2 and are disobeying their diet and exercise instructions. One horror story involved a Type 1 actually having her insulin cancelled and replaced with metformin, which obviously did nothing, and on complaining that her BG levels were going over 20 (360) she was forbidden to test her blood! It took many months before her insulin was restored and she was able to return to BG in the normal range, just as she had previously been doing on insulin.
In my case nearly all my symptoms fit neatly into a pattern. I have to wonder why this pattern was not noticed by people who are trained – and paid a lot of money – to do such things. “Saving” money may have been a factor – although a purely short term one. Probably saving face was important, doctors unwilling to admit that a colleague may have made a mistake. Maybe I actually am such a bad person that I did not deserve proper diagnosis or treatment (a suggestion made by a psychiatrist). Maybe I was enrolled without my knowledge or consent into a longitudinal study with instructions that I must always be in the control/no treatment group.
When I look back at my mother’s treatment there’s another possibility which is truly disturbing: she was incorrectly diagnosed with Munchausen’s Syndrome, and me with Munchausen’s By Proxy, in which case attempting to diagnose or run tests would be seen as reinforcing the “mental” illness. There was an example a few years back where a couple of narcissistic pediatricians determined that unexplained childhood deaths were a result of this, and several innocent mothers having just lost a child were then arrested and imprisoned. Yet like the diabetes/metabolic syndrome, genealogical research has turned up a significant number of children who died within the same line of my family, including my siblings who died before or soon after (premature) birth.