Hi Nic
I am T2 on Metformin only. My HbA1c was 8.1 in Jul07 when I was diagnosed and my first BG reading on my meter was 11.6. Not as scary as other people but it was scary enough for me !! I enjoy reading your blog, thanks for all the interesting info.

I can’t remember exactly but it was something like 33. The doctor told me to go home for the weekend and not eat sugar. I think I was 15 when I went to the clinic on the Monday so was definitely still honeymooning. I bought the Diabetic Living mag yesterday and there was a story about a guy who was 78mmol/l when diagnosed!!!!!

hi, i was only diagnosed in October 2010, so still learning lots. Mine was 36 when diagnosed……

I can’t remember what the reading was exactly I know it was over 40mmol/L and that the testers couldn’t tell them – laboratory only so it must have been high. I want to say 60mmol/L for some reason but can’t really vouch for it I’d lost 7 KG in two weeks too so was most definitely past any honeymoon!

I was amazed at those stories at dinner on Monday. Did I hear someone say something about hearing a story about a guy hitting 100mmol?!

I was nothing too bad … 24mmol I think or 26mmol.

I do remember being in hospital though and they injected me with too much insulin so I could feel what a hypo felt like! I just remember this immense need to eat everything I could see! (Guess my symptoms are still reliable since that’s how I still feel today!) haha

Ruthie I can remember that too and it was so, so terrifying at 8 years old.

I’ve often wondered if it could be done to the odd non-diabetic so that they can get a feel for how horrible it is to be Hypo. Not out of malice, rather, a genuine “this is what it is like” similar to pump reps wearing a pump for a few days so get a feel for the constant nature of them. Just a thought?

I was pretty lucky when I was finally diagnosed… Mine BG was only about 13 mmol/l.

Tyler was 11 yrs old and the meter or pee strips couldn’t read the sugar level. The GP told us to go home, pack a bag, and breathe before heading off to Starship.

I do know that his A1c on admission was 17.4%!

i was 21.. it was 13.5 fasting..

never had i peed so much in my life..

No idea. I was only 4 when I was diagnosed (T1) but there were plenty of times in my teens when it was in the 20’s.

Mine was about 20. I felt really sick by then, had lost 8kg in 3 weeks and was drinking gallons of water. I was too tired to get through a day at work, would get home and sleep, husband would wake me up for dinner, I ate some then went back to sleep. Then went to work feeling tired. By the end of the 3 weeks I felt so tired and sick I didn’t know how I was going to sit in docs waiting room, must have looked bad too, my doc was busy and receptionist sent me in to see another doc.
I can’t imagine what BGs of 80 or 100 would feel like. Must be even more horrendous.
I started drinking gallons when I had flu and continued after that so they think it was the flu that started my diabetes.

50s, 70s, 100??! OMG.

And injecting you with too much insulin so you’d know what a hypo felt like? O.M.G Where have I been?!

I was boringly low – fasting in the 20s, but only the 20s.

I was 44 if I remember correctly. Like (the other) Alison I didn’t fully recover from a bout of chicken pox which so they suspect that “triggered” the diabetes (though I’m sure I would have got it eventually anyway).

I was never injected to induce a hypo but I’ve often thought it would be great to do to my husband so he’d have a better understanding.

I’m with you Saffy – that’s pretty mad, giving you a hypo!! Having said that though I sort of wish I could do that in a controlled way to some of my nearest and dearest (with their consent of course!!) so they would understand what it’s like. I suggested it to my husband about a year ago and I think he was wondering if he should get a panic button installed.

I think my BG was around 30+ when I was diagnosed, age 11. I had been gulping fluids, peeing constantly and feeling absolutely awful for almost a good week and lost loads of weight even before that. I then spent a week in hospital and during theat week I was also made to have a hypo so I knew what the warning signs felt like. I remember running up and down some stairs to help lower my BG level. It successfully dropped to about 1.5!
The treatment back then was with syringes and NO SUGAR EVER, plus counting portions of carbs at every meal. No flexibilty. Food was to match the consistent insulin dose rather than the other way round. Thank goodness things have changed since then and we can adapt our insulin to fit around our lives, not adapt our lives.

Wish I could have made it to the dinner to chat with some of you – maybe next time!

I got the crappiest Christmas present ever on 20 December 1984….a BG that turned the pee strip black and a BG of the high 20’s-30’s on the blood test strips at Timaru hospital. They probably didan accurate one in the lab but I’m not sure what that was. I was sent straight from the GP’s to the hospital as going home then to the hospital would have been a round trip of over an hour. I did get a new nightie out of it… It’s good that things like that matter to 8 year old girls.

I also had the induced hypo so that I’d know what it felt like – the normal insulin and nil by mouth until I dropped, at least I knew what it felt like so it wasn’t a problem when I was at home.

Little did I know of the battles that were ahead of me and my poor mother with Timaru Hospital.

That should be urine glucose in the first line… so used to BG now…

I was only 15 months old when I started drinking and drinking – evidentally. My parents were eventually told to drive me to Palmerston North Hospital where a Doctor thought it might be diabetes, something they didn’t know a lot about then. Sugar in urine – who knows how much but I nearly died. That was back in 1962.

Kel was sick for a couple of months before I could convince her GP ( that should read EX GP) that I was anything other than a neurotic mother. I eventually asked for a second opinion as I thought she might have diabetes..he didn’t as kids that young didn’t get it apparently. ( 1992..she was 15 months old) He didn’t have a working meter in his surgery so did a dip stick, which went quite purple..and made us an appointment to see a paed in 10 days. By then, she had lost half her body weight..around 7 kg and her bg was 33. She wouldn’t have lasted much longer.
I’ve seen HbA1c’s of 17 -18% and knew of a chap with a bg of 96 when he was diagnosed..and he still seemed reasonably well. He just had a broken bone that wouldn’t heal.

Jo – we must have been diagnosed around the same time (I was dxd in 1989) – was taught to eat to my insulin, not the other way around as well.

Ali – I had chicken pox the year before I was dxd as well. I think that is also what trigged my onset of T1. Ironically, my best friend at the time was dxd a few months before me so my mum picked up the symptoms early and I wasn’t really that sick when I was in hospital. I do remember being put with the cystic fibrosis kids too … after researching for my funding campaign recently, I’ve learned that 30% of T1’s are apparently also CF sufferers too … I don’t know many other T1’s with CF – any of you know of anyone?

My hubby also wants me to inject him with a unit of novorapid to see what a hypo feels like, but every time I go to draw an injection up, he wusses out. Although I’m thinking this weekend might be a possibility … I’ll report back!

I also had chicken Pox the year before diagnosis. Must be something in that?

Sianne – yep, definitely aye. When you consider that T1 is an auto immune disease, there has to be something viral that sends our immune systems into overdrive. Makes sense to me, especially since I come from an enormous family and I’m the only one with it, so I have no genetic predisposition to it.

I also read in other research that babies who are exposed to foods with gluten before the age of 3 months are more likely to develop T1 and I also found a clinical study stating that children who contracted rotavirus infections were also at greater risk of developing T1. Also read that in children with fathers with T1, their chances of developing it are higher than if the mother has it (but only by 2%). Interesting stuff to think about though, huh?

I was always told by Professor Elliot who was my doctor way back when, that if they knew what caused the disease, there’d be a cure for it… but I guess he’s gone from that stance to replacing what gets lost and hopefully his islet trials will work wonders.

I had appendicitis a year and a half before…. hmmmm.

Ruthie – I am aware of a couple of kids with Type 1 who have CF siblings. There is also a CF induced form of diabetes but my understanding is that it is quite different and wouldn’t normally be included in Type 1 stats.
There is a viral link for sure – but then most kids are exposed to some sort of virus in any given year and they don’t all get Type 1. Kel had a really bad reaction to her MMR shot at 15 months – although I’ve been assured that it wasn’t the cause I know that she was never well from that moment til her diagnosis. She was still being breastfed and living on our own homegrown fruit and veg. She possibly has a genetic predisposition in that my MIL had Graves Disease, an autoimmune condition and 2 of my cousins were diagnosed with Type 1 as adults. My other children have been tested and have negative antibodies so she just drew the genetic short straw( tho her sisters say she got the ‘good hair’ genes so not all bad!). I miscarried her twin at 13 weeks and almost lost her – a time when the pancreas is developing so perhaps she was always going to get it. If not the MMR the it could have been the chicken pox they all got 6 months later or any manner of other lurgies the other kids brought home.
Theres also the accelerator hypothesis. Kids who were prem or c-section are over represented in Type 1 stats. Lots of correlation but no real cold hard scientific facts.

This stuff is really interesting about the correlations across CF etc. I’ve also noticed that I know loads of ppl with diabetes and coeliac disease – correlation there too I’m.

In for a dime, in for a dollar.

Lots of food for thought here! As a child I frequently had tonsilitis. Not sure if that’s relevant or not???
But something I always thought was strange was that my childhood neighbour became type 1 at a similar age to me and just before him, a girl directly across the road was also diagnosed. An unusual coincidence?

Oh and yes, Ruthie, we were diagnosed in the same year. 1989! Akld hosp with Prof Elliott.

Aaron – between 5-10% of kids here have Coeliac as well. There are studies to suggest that if you catch the coeliac first and go GF then you might prevent Type 1..or at least stall it. All kids in NZ with Type 1 are routinely tested for coeliac …most are asymptomatic and don’t even know they’ve got it til the test comes back. Kel had a positive antibody test when she was 8 but then they’ve been negative ever since.
Jo – here goes another of my conspiracy theories -did you live where there used to be fruit trees or market gardens?? I do wonder what’s in our soils at times when you see all these new subdivisions going up – one minute they’re farmland or orchards, then spray, slash, burn and build and hey presto… 700 houses!

I agree that the viral thing is the final knife in the pancreas, but I believe you will have been getting to this point for some time previously, might even be over several years.

Well my poor wee girl didn’t have a chance! We lived next to an orchard with constant spraying. Finally gave her the MMR at 3 & a half, she got the swine flu 10 days after MMR so reaction and flu together! She’s been very wheat intollerant since a baby! She also gets severe reactions to sandfly bites and viral asthma (any word on how redipred steriods affect it?). She’s had her share of vomiting bugs too. I’m interested in getting the antibody test on my other two girls – whats involved?

Its been our experience that steroids such as redipred can cause some insulin resistance and push levels up ( assuming its in liquid form).
Depends where you are Karen for the anti bod test. The testing centres are Auckland and Christchurch so I’d suggest talking to your specialist in the first instance and ask them to organise the tests. One of my boys didn’t want the test done – he felt he would rather live his life as if he was never going to get it, rather than risk finding he had positive anti bods and make other life choices as a result. He has an ‘ignorance is bliss’ atitude! I am aware of people well into their 40’s who have pos anti bids and no sign of Type 1.
I guess its like having an amnio – you get the test but only if you know how you’re going to cope with the answer.

I was diagnosed at the age of 6 and my blood sugar was 48 – we even got a police escort to the hospital so mum didnt have to stop for lights… was kinda cool to a 6 year old.
Mine came on very quickly, lost 6 kg in two days.

Diagnosis. from what I remember (things were very fuzzy – a lot of in and out of awakeness/consciousness I think) I was 16 years old, had just come out of hospital after an operation on my kneecap to stop it dislocating and was 6 weeks on crutches. It was Christmas time and was told to park myself on the couch and only move if absolutely necessary (eg loo trips). I was eating heaps – piles of chrissie food and watching tv and sleeping and thirsty – peeing alot and losing weight. I looked a bit sad – like a pic of someone from Kampuchea or somewhere – on crutches, no breasts or bum anymore and rib bones sticking out (not that I was going around naked!). Don’t know how much I weighed but my clothes did actually fall off me so must have lost quite a bit. My mum had been a nurse and suspected diabetes so took me to GP for check up. Was 22 m/mol I think at diagnosis – so pretty mild but felt like crap. Friends visited me at home and I fell asleep while they were there. Specialist said that I would have developed it but probably over a longer period of time and the shock to the system of the anaesthetic probably brought it on sooner. Wasn’t given the induce a hypo thing – a weird (experiment?) I think – since the reason I’ve heard mentioned for not inducing hypos in people for studies or research or Dr’s to experience what it’s like – is that it is like against (I guess hypocratic oath?) to cause something detrimental. But can get it could be useful to do it in a controlled environment to ‘educate’ someone who inevitably will have one (prob in less controlled circumstances).

I was 14 when first off my brother got really ill and they diagnosed him, when they tested me i was borderline so they put me on some nicotinamide(?) tablets. But it didnt work. I never went to hospital – just had a nurse come round telling me i needed to inject my self every day. I never really felt unwell (but looking back i was very skinny) I never delt with the reality for years and years. In fact half of my friends never even used to know. I was a closet diabetic! I still dont make it a big part of my life – even my husband sometimes forgets I have it, I just pray my 13 month old doesnt have it.
When do doctors test children – should I just test his blood myself – or am I just stressing???

I was 12 when I was diagnosed, and my BG level was 55.

At the time I was competing at Bay of Plenty Age Group Swimming Champs and attempting to qualify for national age group champs. I hadn’t been sleeping very well at all for around 2 weeks leading up to it, and was up most of the night drinking and pissing. At the time, people put my lack of sleep down to nerves etc. But one night, around 2-3 days through the meet, I couldn’t eat much at all, and got bad stomach cramps, so my parents called an emergency doctor, he did a blood test with those old test strips which changed colour. Anyway, both the top and bottom were pretty much black! (light blue and a light khaki colour were within the normal range from memory).

Once I was diagnosed etc, my swim times improved by a substantial margin in the course of just a few weeks to a month. heh. (was in hospital for around 3-4 weeks)