How long without insulin? A few questions

fionaclare

Well-Known Member
Messages
53
Type of diabetes
Type 1
Treatment type
Other
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.
 
Last edited:

Jaylee

Oracle
Retired Moderator
Messages
18,216
Type of diabetes
Type 1
Treatment type
Insulin
I can only give you my own experience..

As a T1 diagnosed as a kid in the mid 1970s I fell ill pretty quick, lost a shed load of weight (I wasn't big to start with.) & was DKA the time I was admitted to hospital.
Straight onto the insulin for life!

To be fair, my carb consumption is low. (Compared to what is a "moderate" intake.)
But as a T1, even if I lived on chicken, Bacon & water? Insulin is still paramount for BS managment....
 

Nidge247

Well-Known Member
Messages
205
Type of diabetes
LADA
Treatment type
Diet only
I received my diagnosis at 8.35am from the surgery, I was on insulin by 11.10am the same day - so pretty quick for me. However, I did have the highest HbA1c they'd ever seen!

So, a fairly dramatic progression for me.

As my life was under threat, with a wooden box in the offing if I didn't take control, I was very grateful for the diagnosis and swift action.

However, D is very much tailored to the individual. There are always similarities, but no two people are 'the same'.
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
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.
 
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fionaclare

Well-Known Member
Messages
53
Type of diabetes
Type 1
Treatment type
Other
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 that is really useful. Eight years is a really long time. Did you change your diet significantly during that time to manage it?
 

fionaclare

Well-Known Member
Messages
53
Type of diabetes
Type 1
Treatment type
Other
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?
Thanks!

My fasting bs this morning was 5.4

After dinner last night it was 6.8.

A couple of weeks ago they were bouncing around a bit (6.1 - 6.5 in the morning for example), but this week they have settled down and have been in the around the same level as this morning.

In the afternoon before dinner they will consistently be around 4.8.
 

Pmerrill

Active Member
Messages
44
Type of diabetes
Type 1.5
Treatment type
Insulin
Hi there,

I was diagnosed as 1.5 LADA in April 2014 and am still in the honeymoon period. I was very low carbing with lots of exercise for probably a good 18 months and managed to control my BG very well without meds. I've recently started to introduce carbs back into my diet (from sept 16), hospital wanted me to try and see what effect it has. I'm now monitoring BG closely keeping food diaries, exercise lots and still steer clear of bad carbs. I'm back to the hospital in march for a review and can guarantee my A1C is going to be a lot higher than previous. I guess they might recommend insulin at that point but we'll see. For now I remain insulin free so to speak. TBH I'm glad to be having some carbs as well, gives me more energy at the gym although I have put on a few pounds as a result!

Good luck to you!

Pete
 
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Fido78

Well-Known Member
Messages
58
Type of diabetes
LADA
Treatment type
Insulin
Diagnosed LADA dec 2014. Was put on mixed insulin straight away. Now I take 10 units of lantus before bed. my last c-peptide is in bottom range of normal 2 years after diagnosis, and my doctor told me that after 6 months I would have no residual insulin secretion. So I definitely think helping your remaining beta cells with injected insulin and in conjunction with low carbing you will not overwork your remaining beta-cells and stand a better chance prolonging your honeymoon if that is what you aim for

best of luck!
 
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Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Thanks that is really useful. Eight years is a really long time. Did you change your diet significantly during that time to manage it?
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.
 

DaftThoughts

Well-Known Member
Messages
397
Type of diabetes
LADA
Treatment type
Insulin
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!
 
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wiserkurtious

Well-Known Member
Messages
368
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
diabetes :P having to eat food in moderation
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 so i was diagnosed type 1 july of 2015 after a spell in hospital with DKA.after my stay they put me on long lasting insulin which i took for a couple of weeks.but due to having hypo's all the time i came off insulin round about the sep/oct time :) I'm still not on any insulin but my level over the last few months have been a little erratic which indicates to me that now maybe the time for treatment,;) to bad of a honeymoon stint :).my hbalc have been below 6.1 % since diagnosed but my next 1 is coming up on the tues and I'm convinced this is going to be higher for sure
 
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wiserkurtious

Well-Known Member
Messages
368
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
diabetes :P having to eat food in moderation
exercise and diet worked for me at the beginning but now its very hard to control.I m hitting 14s now which i m not comfortable at all,it might sound a little odd but I'm hoping for my hbalc to actually be higher because I can get the insulin to be able to keep tighter control becuase atm...i m not doing as well as I'd like
 

fionaclare

Well-Known Member
Messages
53
Type of diabetes
Type 1
Treatment type
Other
Thank you so much for these stories. It helps a lot to know just how individual everyone's situations are and experiences with different drugs.
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
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. 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.
 

fionaclare

Well-Known Member
Messages
53
Type of diabetes
Type 1
Treatment type
Other
No doctor has mentioned oral medication other than metformin yet. I see a doctor at the diabetes clinic at the hospital every 3 months (I'm in New Zealand).

The appointments are 45 mins - 1 hour long, so I have time to discuss things.

What I am struggling with is lack of information about late onset T1, and any real scientific studies about ideal treatment.

Most people assume I have T2, it's frustrating explaining that I am T1 but don't need insulin yet. I carry the letter from my specialist to medical appointments so doctors believe me!
 

Streety

Active Member
Messages
44
Type of diabetes
LADA
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!
 

fionaclare

Well-Known Member
Messages
53
Type of diabetes
Type 1
Treatment type
Other
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!

Thanks, that's helpful too.

I struggle with tiredness too. Would like to exercise more but I'm a solo Mum with a full time job, so fitting running a home, being a Mum and progressing with my career leaves little time.
 

Streety

Active Member
Messages
44
Type of diabetes
LADA
Oh, gosh, I was a solo mum for a while with 2 little boys. Yup! Absolutely understand. Even if all you can do is incremental things, that will help.

I get off at one bus stop earlier. My building has stairs which I take if the meeting is a few floors away. I promise myself to always go for a walk at lunch (never really a problem in my part of the world). I stand on the bus rather than sit.

Another thing to consider is high intensity. I do mine in the morning when I can't face walking around the block. I jump on a stationary bike, warm up, bolt for 30 seconds then cycle moderately for a few, then bolt again. I'm building up to 15 minutes with this as that's enough to get results. I saw Mike Mosely from Trust Me I'm a Doctor confirming the results of an Edinburgh study on this. Something you might look into. Really pathetic weight training is another thing I do at home - pathetic because lots of reps but low weights, trying to get rid of my tuckshop arms and lunges and squats.

The most important person to look after is you when you have other people depending on you. Good luck!