I guess I’m one of those RARE slow onset LADA diabetics.
From diagnosis in 2000 to beginning use of insulin took ~15 years. During that time period I spent ~10 years “controlling” it with diet and exercise, honestly I waited too long to start some sort of therapy because my A1C at that point was in the low 7s. For the next 3 years or so I tried Metformin, Onglyza and finally Victoza to varying degrees of short term success. Metformin “worked” (kept my A1Cs in the mid 6s) for close to 1.75 years and Onglyza didn’t do anything at all. I had a bad experience with Victoza, initially it moved my A1Cs into the low 6s (from low 7s) but totally killed my appetite and made me nauseous all the time even at the lowest dose. By the time I got off of it (~1 year) I had lost almost 30 lbs and my A1Cs were in the mid 7s again.
During this whole time I was classified as T2, at the end of the Victoza period my endo requested antibody tests and I came back positive for insulin antibodies and was reclassed as T1.
I did MDI for a while but am very sensitive to insulin so switched to a pump so I could “micro” dose.
Through all this I contemplated a very low carb diet and rejected it because I like food and want to enjoy life, so I went on insulin, which I’d eventually need anyway.
Personally I don’t understand the attitude of some people who are willing to drastically change their life styles to manage their BGs, especially when the management tools are so effective these days. This is my own perspective so don’t think I’m being critical, I simply can’t take that big step myself. Of course I was diagnosed at 35 and didn’t go on insulin until close to 50, I’m 52 now, so I had a “normal” life for a long time and am not willing to let this “condition” exercise control over my life.
My advice to both @bjm2363 and @Sam19 is to have an open mind about switching to insulin, don’t be afraid of it and don’t wait until it’s too late. I’m glad I went on it but I really had very little choice, staying on Victoza and upping the dose was not an option and nothing else seemed to work at all.
I had a fasting bg of 400 and was put on insulin day 1 with high urine ketones… I was one of those clear cut cases where the benefits immediately outweighed the risks…
ETA and even in that case the GP still put me on metformin at first until the CDE called him and persuaded him to start me onninsulin
After discussing my options with my husband (who is pre-diabetic now) I decided to go with Option 3 below:
[quote=“bjm2363, post:14, topic:57909”]
Reduce my carbs and add fat in hope that I can maintain a normal A1C for as long as possible without losing more weight. [/quote]
What I haven’t decided is how low carb I will go before I feel restricted or lose too much weight that I ask my endo to add another med, whether that be insulin for meals or not. I certainly wouldn’t want my A1C to go above 6 seeing that my parents suffer from complications, which landed them both in a nursing home early. My mother always had an A1C of 6.5 or less and is now on insulin after 10 years diagnosed; although she was designated as type 2. I appreciate all the advice and different viewpoints expressed- it’s given me a lot to think about
So many things affect that honeymoon period you and your endo believe you might be extending (infection, OTC Meds, flu, etc…) you could rapidly descend into a DKA episode without insulin - seeing your endo every 3 months is a little risky for whatever benefit foregoing insulin therapy might provide. Please track your BG at multiple times each day and get to your endo or emergency quickly at the first sign your BG’s are significantly out of range. Initially diagnosed as a T2, the end of my honeymoon period earned me a 5 day stay in intensive care due to DKA. You are not a case study for your endo - please stay well
Thank you for the advice and concern. Your story sounds a little scary. Do you mind sharing what happened with you, assuming you had stable blood sugar and suddenly they became unstable? Were you on meds or just diet and exercise ? I am a little worried about DKA, but I monitor my blood sugar so closely that I’m thinking I would know if they start to ride suddenly. I’ve been spiking over 200 + lately and I can usually trace it to going over my carb limits and I always come back down to acceptable range within 3 hrs.
In addition to your blood glucose meter you could also get a blood ketone tester. When your blood sugar is high for a sustained period, say several hours at 250+ mg/dL, and you have a certain level of ketones in your blood, that is the tip-off to get help immediately. I’ve found that blood sugar can be high with low levels of ketones and that is not a DKA concern. It looks like you are diligent with your care. Adding a blood ketone tester would give you the tools need to properly assess your DKA risk. Ketones may also be tested using urine but the results are not as precise.
I was 45 and overweight and hit an ave BG over 250 on a work sponsored health screening. My primary ran no tests - at my age and weight it seemed likely I was T2. Told to diet and exercise I threw myself into diet and exercise that masked what was really transpiring. I had not been advised to monitor my own BG so I attributed some obvious high BG symptoms to my weight reduction program. The night I slipped into a coma (out like a light RG) I thought I had a bad flu - I was lucky my husband woke early the next morning at my core body temp had begun to drop.
True in the past, but they have modified their opinions. Some presentations, like mine are acute. I had an A1c of 5.2 (average of 3) and no indications of any problems, 8 months later I was 13 and my numbers were in the 400+ range…I was put on insulin immediately and have never left. All my anti-body tests were wildly positive and there was by the way no diet changes or other things to cause the sudden change.
Right, but that’s my point. The opinions haven’t been modified, there is just the recognition that Type 1 doesn’t present in all adults in the same way. You (and Sam, and some others here) got the full-blown, DKA, Type 1 like it often presents in children experience. I, and some others here like the OP, get the slow-burn, yes we got antibodies but it just isn’t progressing very rapidly experience. Type 1 in adults isn’t happening sooner than it used to, and for those with slow-onset Type 1, there is often still a period where insulin isn’t necessary or advisable (the last bit being debatable).
The question here is not about whether rapid-onset Type 1 in adults should be treated with insulin. That’s unquestionable. However, for the small subset of us who have Type 1 but can control BG with orals and diet and exercise in the early days after diagnosis, what is the best option? The OP’s doc seems to think avoiding insulin therapy until it is necessary is the best approach. My doctors agree. Other endos think that early treatment with insulin is the best approach, regardless of the level of control.
You and I (and OP) have different experiences with post-diagnosis. That’s not an opinion change, it’s just a fact: diabetes (of all types) varies remarkably between patients.
