Hi. Have a look at the NICE Diabetes Guidelines on the web which explains at what levels insulin should be considered rather than tablets. Late onset T1 progresses at wildly differing rates so it could be years before you need insulin; use the HBa1C as a measure. It took around 8 years for me to go from initial 'T2' diagnosis to insulin. My GP panicked when my HBa1C went up to 8.3% for no apparent reason (my body was fat burning then to get energy) so moved me to insulin. Be aware that if you are not overweight, the Metformin won't do too much but helps a bit. Gliclazide is the next drug to be prescribed typically before insulin as it helps the pancreas produce more insulin. I had to suggest this to my dozy diabetes GP.
Thanks!Tagging @wiserkurtious for you @fionaclare
He's about to,start insulin as his blood sugars are rising, I believe.
How,are your daily blood sugars?
Hi again. For the 1st year before I knew about carbs and following the (bad) advice in my local NHS diabetes booklet I had an average mixed diet. As I learned more I reduced the carbs which helped slow my progression. In the last 2 years before insulin I was on full dose of all the tablets, eating little but still had an increasing HBA1C. Because I was listed as a T2, my GP refused me insulin to start with but a year later realised I had to have it. So, it you are given tablets before insulin make sure you move to insulin earlier rather than later; an HBa1C of over 7% is a good indicator.Thanks that is really useful. Eight years is a really long time. Did you change your diet significantly during that time to manage it?
I was diagnosed with diabetes in mid-June ( Hb1ac of 84) 2016 and then returned anti-GAD antibody test in August with levels suggesting T1.
My Hb1ac in September 2016 was 31 and in January 2017 32.
I eat low carb and I currently take 2 times 500mg metformin.
My questions are:
1) how long was it until you used insulin from diagnosis?
2) was your progression slow or dramatic?
3) if slow progression what criteria did your doctor or specialist use to decide you needed insulin?
Edited to add: this is for people diagnosed as adults.
Hi. I also regret being on full dose (320mg) Gliclazide for many years. It only worked for the first year or so and, like you, I wonder whether it accelerated the decay of my beta cells. I wish the NHS recognised LADA more generally and moved to insulin earlier rather than later. NICE is beginning to understand it.Diagnosed LADA in late 2014. I was prescribed Metformin initially. Due to my fixed income and inability to shop around as much as I'd like, I haven't been able to change my diet the way I want to. I am mindful of carbs but still average between 120-200 grams a day because the foods I can afford have those amounts of carbs in them. This meant my A1C levels stayed consistently high as the metformin didn't do enough on its own. I was prescribed gliclazide and for a while, I was doing excellent with my diet and med combo. I had dropped to 6.4 from being in the 7+ range.
I believe the gliclazide accelerated my condition. By June 2016 I was on basal (Toujeo) insulin alongside Metformin and a double dose of gliclazide, as my levels had gone from good to bad again (7.5). I gained weight like crazy, had massive fluctuations in my glucose levels and I couldn't find the right balance for my diet. No two days produced consistent results. I had to eat a lot when I exercised because I hypo'd super fast, but without the gliclazide I skyrocketed at every turn.
At the beginning of this month I got started on bolus (Novorapid) insulin and dropped the gliclazide. I am still using Metformin (I have no side-effects from it and it does help in my situation). My body's own insulin production has dropped significantly, as the gliclazide was making it work overtime to produce insulin, but I am finally getting stable values throughout the day. Stress and insomnia do affect me, as they would anyone else, but I have not gained (I initially lost 1kg) weight and I am able to eat much smaller meals because I can properly adjust my insulin to what I eat.
I regret having been on gliclazide for so long. The Metformin is relatively harmless to your pancreas, but the gliclazide forces whatever beta cells are left to produce extra, and it wears them out faster. I spent an unnecessarily long time with too high of an A1C, suffering rollercoaster levels and being forced into a diet I didn't want to be any worse than it already was.
My recommendation is to listen to yourself and your body. This disease is incredibly personal and while you can take info from our stories and take what you need, ultimately we can't decide for you. If you feel you are losing control of your condition because you do not produce enough insulin for your diet, then it's time to switch to insulin. I strongly advise to turn down meds like gliclazide because I haven't really found anyone for whom it worked more than a few short months, myself included, before it turned into a rollercoaster hell. In the end, a LADA/1.5 will become insulin dependent, and if your oral meds aren't cutting it anymore to get the control you need, it's time for insulin. When that point is reached, is up to you!
Hi Fiona, I understand the frustration. I've found this forum to be an excellent resource.
Because of my extra weight, people assume it's type 2 whereas it's the condition that's made me gain weight.
I actually eat rather well before and after diagnosis.
For what it's worth, my history is:
diagnosed in Nov 2014.
still insulin free with hba1c of 6
I'm technically in remission.
I started on metformin but it had bad gastric reactions for me at the nether end
I tried exanitide on specialist recommendation but it made me very nauseous
Now I am doing very well with victoza (liraglutide) and forxiga.
I still need to lose weight but low carb / high fat has been a revelation. I'm still trying to hone my diet but it's lovely being able to
eat a decent meal again rather than stick to low calories.
I'm losing weight very slowly but get stymied any time something stressful happens in my life.
My levels are good but go up when I'm fighting a cold or infection.
I do think the changes in my system have made me prone to fatigue and depression, so watch out for that.
Exercise is my friend and is good for weight, heart and depression.
Good luck with your journey!
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