I decided to see what would happen if I stopped taking insulin for a while. I got concerned by the cancer link, as I am a melanoma survivor and I was also worried about the preservatives and other additives. I’m still in the honeymoon phase, 2 years post diagnosis, but thought I needed basal (6 U Levemir 2Xday) and 2-3 U Novolog with meals to get good control. I have been really surprised to find that my BG numbers are just the same without insulin. I eat a very low carb diet and have been doing 20 minutes of vigorous exercise after meals. My fasting BG is around 88, and one hour after eating am back to the same level. I stopped about a week ago and continue to test frequently as I keep expecting to see higher numbers. I had allergy food testing done a couple of months ago and was able to stop taking blood pressure meds, so perhaps avoiding the foods I am allergic too has helped my pancreas also.
From what I have read about the connection Lantus/Cancer : Do not stop taking insulin without discussion with your Doc and Health Team .Same for any other type of insulins I would suggest . Have you lost weight since diagnoses ??
When my honeymoon was spectacularly strong, my endo insisted that I stay on 1U a day, just because he had some concern about the possibility of me becoming spectacularly resistant to synthetic insulins. Apparently, this was a concern with some of the older insulins, when one discontinued and recontinued. Your mileage may vary.
Wow, that’s great that you can maintain such perfect numbers without insulin! Wishing you continued success.
Were you having lows before you stopped your insulin?
In spite of how promising your numbers may be, please make sure to involve your doctor before making any changes to your treatment.
I took Lantus for almost two years, so I was concerned about the news about the possible cancer link, but the studies published were really not conclusive. And in any case, changes in treatment should be made only with the doctor advice.
My two cents…
Hi Libby! I’m glad that your numbers have been good. Do you know what your c-peptide is? I wonder if your body is producing a normal level of insulin or not?
I also am not too concerned about the Lantus news. Too little is known and weak science has shown many links to cancer that are not so solid. But I can understand why this concerned you, given your past struggles with cancer.
You need to consider the value of preserving your beta cells, and weigh the probability of your getting heart disease (as part of the general population, LET ALONE as part of the diabetic population), against the probability of getting cancer … and add the increased risk of cancer from Lantus to that. I suspect that heart disease would still “win!”
As Type 1.5’s we need to look not only at our short-term blood glucose control, but the long term value of preserving our Beta cell mass.
My C-peptide is in the normal range. I was having a lot of lows on insulin, especially when I was working in the garden, frequently going down into the 50s. My endo didn’t want me to be taking insulin in the first place, since my BG numbers were so good, so she is fine with my trying this. I am definitely still making plenty of insulin but have almost no first phase response. That’s why the exercise is working so well, it gets me to my second phase. Fasting this AM was 91, blood pressure 105/69. I will continue to monitor closely. Thanks for your input and concern.
Are you bolusing then? I too am still within normal range on C-peptide, and considering when to start insulin therapy, what, and how much, etc. And my blood glucose is pretty controlled (last A1c was 5.8). So I am wondering about going too low. With your lows, the risk/benefit changes a lot (I sound like a demographer – I am not, just pondering my own situation, as well as the scenario you present!).
When I went so low, I would just eat a small snack, usually about 5-8g carbs and that would bring me back up. I have read a great deal about LADA and know the theory that a small amount of insulin helps preserve the beta cells, but in my case, with a cancer history and multiple food and chemical allergies, I feel better about using diet and exercise alone, if I can maintain my BG in the normal range. To my understanding, this is the key. Dr. Bernstein writes that it is possible to maintain the honeymoon indefinitely if you keep your BG normal. The highest numbers I see are still under 140. I just ate breakfast and at half an hour, I’m at 133. Time to jump on my exercise bike!
Okay – thanks for elaborating on your situation and decision – and, it will help me in my decision-making process, down the road.
Hope your exercise was enjoyable!
20 minutes of hard pedaling on my recumbent bike and my BG was 82.
I do recumbent bike, too. It is GREAT! Do you do intervals at all?
I just set it to a “Ride in the park” which is a pre-set program with some hills. I do Level 15 which gets my heart rate up to about 135-140 and do a cool down at the end. I really love it. it’s a Schwinn. What do you have?
Just read your story on your page. Seems like you are much further into the process than me. My antibodies were exactly 5 which is the cut off for a diagnosis. I’ve never had BG over 225 as I have a robust second phase. if it wasn’t for the antibodies I wouldn’t even be considered pre-diabetic. I was lucky that I caught this really, really early. (No help from the medical profession.) I’m not sure that my experience is similar to anyone else’s.
Hi Libby! Now I understand your situation better. If your insulin production is still at relatively high levels, then this does sound like a safe option. I was worried about ketoacidosis, which I don’t think will be a concern in your case. But, if your insulin production will decrease over time, please watch for signs of it… it’s not fun and should be avoided is at all possible!
I’m curious why you were taking long-acting insulin if you first phase is impaired. It seems to me that it would make more sense to take a bolus (fast-acting) insulin when you eat carbs rather than a basal insulin. Were you ever taking fast-acting insulin? I don’t know much about type 1.5 and what the right procedures are when it is caught this early-- just curious!
Yes, I was also taking fast acting, but only when I had a meal that was higher in carbs. I thought that the basal insulin was helping with the small amounts of carbs I ate between meals. For example, i couldn’t have a piece of fruit- 15g or so- without a spike and a crash. But recently I had noticed that I can manage this fine. I attributed it to the basal insulin, but in fact I think it’s more likely that after giving my pancreas a rest, I can manage a low carb diet with diet and exercise alone.
I have read your beta cells can regenerate to some extent. Not sure how long it takes to maximize htem or anything … hmmm … new thing to look up!
I have a commercial NordicTrack bike I got from CostCo – it is huge … but I do like it. My husband claims the crank is too long for my calves but it does not bother me. I have been doing biweekly short intervals, like 30 sec x level 11, 1:30 x 7, repeated 8 times. It is … invigorating! And it has gotten my base aerobic rate (pulse > 120 – I’m OLD!) up from 4 to 7 at 8 MPH, in about 3 months.