been told to come off insulin

wiserkurtious said:

Update!! so yesterday i was told to come off insulin to see how things go. this morning I've just took morning bs and its 5.1,which is normal for me since diagnosis.off to do morning run i ll in form yous later on tonight to see how today goes,have fun guys

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Have a look in the LADA section of the forum. There are lots of threads over there discussing ways to extend the Honeymoon as long as possible - and they are a lovely bunch over there.

My view on the 'honeymoon' thing is that it's so variable as to be very suspect and with little sceintifc evidence to support it. People vary greatly in their blood sugar behaviour when insulin is started and I would like to see this label avoided and the specific needs treated based on meter readings etc. Can the OP let us know what the twice-daily insulin type is i.e. is it a Basal or mixed and what is the 'm' after the insulin units?

mrspuddleduck said:

@Diamattic you're experience of the honeymoon period and mine appear to be very different! Mine has been, and continues to be a daily hell (although I do have the added complication if steroids) and personally can't wait til my useless pancreas finally gives up and I can gain some control. Can I ask, how long was your honeymoon period and was it really as smooth and 'great' as you describe? If so, how did you achieve it?? !!!

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Well, I would say my honeymoon lasted AT LEAST a full year.. That entire first year I had a insulin to carb ratio of 1:22, now it is 1:14. I was able to eat up to 10 or 15g of carbs without needing insulin at all, still never had any spikes, or lows.. it was strange but my body just seems to 'correct' for any mistake I may have made.

During most of that year I did nothing special, and it wasn't until around month 8 or 9 that I started looking into Dr. Berstein and low carb, at which point i reduced my carb intake.

I don't know how others are affected by diabetes, but mine seems very predictable. So far i have never had any " OMG whats happening with me?' moments.

Its always been a flat line all night long, and then up after meals coming back down to rest at around 4.5-5mmol/L. Based on this i have to suspect that I am still in my honeymoon. Obviously if i inject the wrong amount or count my carbs incorrectly i go up after the meal and stay up, but for the last 6 months or so i have been weighing everything i eat, eating low carb, injecting 15 prior to eating, and eating pretty much the same 'meals' everyday, and its REALLY helped.

I was diagnosed in May 2014, and was on MDI for my entire first year, after my one year anniversary its policy with my doctor to go on a pump, so i went with a Vibe and Dexcom system, and its been SIGNIFICANTLY easier.

Diamattic said:

Well, I would say my honeymoon lasted AT LEAST a full year.. That entire first year I had a insulin to carb ratio of 1:22, now it is 1:14. I was able to eat up to 10 or 15g of carbs without needing insulin at all, still never had any spikes, or lows.. it was strange but my body just seems to 'correct' for any mistake I may have made.

During most of that year I did nothing special, and it wasn't until around month 8 or 9 that I started looking into Dr. Berstein and low carb, at which point i reduced my carb intake.

I don't know how others are affected by diabetes, but mine seems very predictable. So far i have never had any " OMG whats happening with me?' moments.

Its always been a flat line all night long, and then up after meals coming back down to rest at around 4.5-5mmol/L. Based on this i have to suspect that I am still in my honeymoon. Obviously if i inject the wrong amount or count my carbs incorrectly i go up after the meal and stay up, but for the last 6 months or so i have been weighing everything i eat, eating low carb, injecting 15 prior to eating, and eating pretty much the same 'meals' everyday, and its REALLY helped.

I was diagnosed in May 2014, and was on MDI for my entire first year, after my one year anniversary its policy with my doctor to go on a pump, so i went with a Vibe and Dexcom system, and its been SIGNIFICANTLY easier.

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Wow, to be honest @Diamattic, in my humble and admittedly limited experience, I think you have been very fortunate in both your transitioning and in your care opportunities. And whilst I genuinely love your enthusiasm, personally I get the impression that many 'late onset' insulin dependant diabetics don't have such a smooth(ish) journey. I wish you well my friend!

Just to say @mrspuddleduck, you are not alone - I was diagnosed nearly 2 years ago at 31 and I'm still honeymooning, but it adds more unpredictability for me than help as it's not consistent at all. I eat the same thing for breakfast and lunch every weekday, but the impact on my BG levels really varies. It feels like my pancreas can't decide whether to live or die, and while I appreciate its efforts, I can't help thinking it would be better if it gave up!

ArtemisBow said:

Just to say @mrspuddleduck, you are not alone - I was diagnosed nearly 2 years ago at 31 and I'm still honeymooning, but it adds more unpredictability for me than help as it's not consistent at all. I eat the same thing for breakfast and lunch every weekday, but the impact on my BG levels really varies. It feels like my pancreas can't decide whether to live or die, and while I appreciate its efforts, I can't help thinking it would be better if it gave up!

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Thank you, believe me I can relate completely to what you are saying!! Sue xxx

I think "honeymooning" is probably not a good term too. I read something somewhere recently (sorry, not very helpful reference, is it?) that said that there is some evidence that some T1 diabetics still have some active beta cells DECADES after diagnosis. Now, there are a lot of "somes" in there, but that may also be a better explanation of why some people get by more easily than others. My consultant wants to test me for c-peptides next time I go to see him. And I've had Type 1 for 48 years.

@mrspuddleduck - Well yes, I have my experiences to speak from and the only 2 people i know in real life with diabetes were diagnosed at 4 and 6, so they don't even remember the 'honeymoon'.

As far as 'care options' I honestly had no choice of doctors, in my county we have 1 doctor to care for every diabetic, there is no choosing since i live in a very small town. However in Ontario the government will provide funding for an insulin pump and supplies after 1 year as long the doctor treating you signs off on it and this doctor gave me the choice - she would sign off if i wanted one, so of course i took it lol

I have also read that T1D affects women worse then men, but thats something i read online so i have no idea if its true.

RuthW said:

I think "honeymooning" is probably not a good term too. I read something somewhere recently (sorry, not very helpful reference, is it?) that said that there is some evidence that some T1 diabetics still have some active beta cells DECADES after diagnosis. Now, there are a lot of "somes" in there, but that may also be a better explanation of why some people get by more easily than others. My consultant wants to test me for c-peptides next time I go to see him. And I've had Type 1 for 48 years.

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I also read that - think it was on a news release on this site actually. Research is underway to try to regenerate and protect the beta cells of T1Ds, and i remember they did tests that showed that even ppl who had diabetes for decades still had remaining beta cells.

I have been in the honeymoon period, without insulin, for nearly two years now. My diabetic consultant said on diagnosis I would be on insulin within weeks (my GAD was over 2,000). I initially started to low carb, and saw my fasting BG levels gradually reduce to the 6.5 range, then started following Dr Bernstein solution about 15 months ago and during this time my average fasting BG levels have been around 4.5. Dr Bernstein says that he has seen evidence of beta cell regeneration with patients that have kept 'normal' BG levels. I don't believe any of my beta cells have regenerated, indeed I think I have probably lost a few more over the two years, and I can see a very small rise in my BG levels over the last couple of months (an upward trend graph).

My diabetic consultant last month said he thought I had lost 90% of my beta cells, and that because of my very low carb diet, the remaining 10% is just sufficient to produce enough insulin for my needs. He did emphase that I would need insulin at some time in the future (I have a pen at home, in the fridge... It's been there for 15 months now). Surprisingly he also said to keep on with my diet, even when I go on insulin, and to go on insulin very early (when my fastings regularly are around 7.0). He said if I keep to my diet I could stay in the honeymoon period (on insulin) for many, many years, maybe the rest of my life.

I personally am absolutely convinced that insulin making beta cells are killed off with high BG levels.

There are a lot more posts on this honeymoon period in the LADA section of the forum.