Is it a slow, gradual end?
Or sporadic bursts of pancreas-produced insulin until the end?
When I was diagnosed almost exactly a year ago, I was told I was in the honeymoon period and it could last months or maybe years, but I wasn’t told how it would end.
Recently, I’ve noticed big fluctuations in my insulin needs (150% one day, 50% the next) which could be attributed to anything on the long list of things that affect blood sugar, but I’m wondering if the honeymoon period coming to an end could be something to consider.
I’ve got an appoint in October where I’ll certainly ask if they think it’s worth testing my C-peptide again (a year ago it was .4 ng/ml when the normal range is 1.1-4.4 ng/ml), but I’m wondering in the meantime if it’s something to consider.
Hey @Finn, that is tough question to answer. My son was 12 at diagnosis so our process of honeymooning was much quicker. During the entire honeymoon period we had unexpected highs and lows and different amounts of insulin being required, but some of that was our inexperience using insulin. Once the honeymoon period ended our insulin requirements were far more explainable. So I think your explanation makes sense, but it is difficult to say for sure.
Hi @Finn I’m curious to find out how this goes myself. I was officially diagnosed and started on MDI on 4/13 of this year. My last C peptide was 0.7, so I guess the pancreas is still kicking a bit. Will have to ask at my next visit (in a few weeks) what sorts of signs to watch for that I need to move to a more aggressive insulin replacement regimen.
My insulin requirements have been pretty steady the last year until the last few weeks. If these swings are from the honeymoon period (and not something else like the heat or stress), I’d almost want the honeymoon period to be over. It sounds like everything will be a lot more predictable then.
I can say with confidence that once the honeymoon ended, a lot of the uncertainty left. My son has been working a manual labor job all summer and has his blood sugar dialed in and easily controlled using MDI since his pump died. I also think he has gotten a lot better at looking at the activity for the day and adjusting his dosing, which also removed a lot of the uncertainty.
I was diagnosed in April 1999, but pushed back on starting on insulin for about 18 months. During this time I stepped up on the hiking, running, & gym. This together with diet management allowed me to maintain some level of control for over a year. However as I appreached the 18 month mark it became clear from my HA1c numbers that the pancreas had run out of gas and I was losing the battle. By that time I was fairly burnt out, food-deprived, and well over my refusal to start on insulin!
Hi @keith I had a similar saga. Was at 6.4 for two consecutive tests despite running and moderate diet, asked to get on something (they wouldn’t start insulin then anyway) and began 1000mg daily Metformin to no obvious effect. Got it down to 5.9 to 6.2 for a bit, then it surged to 6.6. Essentially starved myself back to 5.9, then got exhausted, gave up, and started MDI.
I second @Mikey417 but be aware that some C-peptide tests are more equal than others; see the link I posted previously to this article:
My experiences are very different to yours; I was diagnosed at the age of 11, towards the end of my twelfth year and immediately sent to hospital. After running from restroom to restroom in my first year of high school (US: I’m translating from UK here) I eventually pointed out there might be a problem to my mother, she rang the doctor, doctor saw me, I had one last bowl of creamed rice at home and my mother took me to hospital.
I spent some time (a week, a month, a year?) there being “stablised”. This was 1972, before C-peptide tests and certainly before the tests for the insulin antibodies. Think about that; without the latter all I know is that I was circumstantially diagnosed as a diabetic who required insulin treatment.
But these are massive differences from you; back at the start of the '70s in the UK the concept of running routine tests to detect issues simply didn’t exist. Doctors sat in their offices and waited for patients with serious illnesses to come to them. So I was pretty far gone when, at the start of 1972, Dr Blay checked me in to the hospital.
What happened then? You’re asking an 11 year old here. I don’t have the faintest idea, but my only peer in the diabetic ward was there when I arrived and was there when, stablised, I left. I assume they meant that my blood glucose levels were stablised.
So I think your story is different; your high BGs were noticed before too many trips to the restrooms, probably not every 45 minutes (1 period; I gave up because I couldn’t manage a double period; I had to ask the master.)
I hope you got an insulin antibody test; you don’t need it now but you will need it in later life (when you reach 65), unless change happens. Get it printed out.
So I suspect from what you said, from your C-peptide, and from what others have said of modern medicine, that you were not unstable when diagnosed. Your body was still producing enough insulin to dwarf any extra required. Now, I suspect, you are at the same state I was at the end of that twelfth year; unstable.
I have more thoughts on the utility, or not, of C-peptide. They’re derived from the link I posted so anyone can work them out.
So I never had a honeymoon, well, except for the restrooms which is horribly reminiscent of Stephen Fry (it was an all boys school too). I certainly think you are correct:
Indeed; while our bodies continue to produce enough insulin to sort-of meet our needs we are in the honeymoon period. The amount of extra insulin we require is minimal and errors are minimalist; I didn’t take any insulin during my erstwhile honeymoon.
So I think you are now in the “stablisation” period, perhaps “eggshell” period would be more in keeping with the modern terminology. You have insulin production but it has dropped low enough that insulin you inject is competing on equal terms for the same job. This is likely, indeed certain, to produce massive fluctuations in blood glucose.
Your endo may be able to hazard a guess as to when this second phase ends. I suggest documenting the whole thing in so far as you can. In the US you can’t document instantaneous C-peptide, Scotland is slightly better:
In the absence of a C-peptide meter the best bet is to accurately document food intake/BG/insulin then take that to the endo in October, or earlier if it seems really whacked out.
No headaches, no problems that I can remember a half-century later. I ate lots of meat, cheese & dairy, nuts, veggies. Not really a sustainable diet. We had very high grocery bills! Checked ketones regularly, and that was the first tip that the honeymoon was over. If I recall correctly it lasted three years.
If sort-of describes my diet. I try to avoid the nuts (protein+fat+carbs, all in one convenient ready to eat package) they don’t seem too work to well, or maybe I just eat too many. I’m maybe lower fat, higher protein, than that. I do eat fruit; it turns out that fruit and veggies have about the same carbs with the amount just a function of water content. Contrary to Bernstein I don’t have any issues with the shift between sugars leaf-vegetable vs fruiting body.
Blood ketones and urine ketones are completely different; urine ketones are a many-hour average and, with the possible exception of acetone, the kidneys don’t start excreting them until they reach high levels. The ketones correspond to a low carb diet, where “low carb” is defined by our bodies; the point where we start converting protein/fat to glucose. I get headaches if I drop to the kind of diet you describe, but by that I mean 50g/carb per day or lower; my blood ketones show what is happening.
I’m pretty sure that if I had followed your diet or my current one I could have lived a lot longer without telling anyone; I think I managed two or three months, though at the age of 11 it might have been two or three centuries.
It seems entirely reasonable that the end of the honeymoon period is dependent on how careful we are during it; that concords with what I said before, adopting a lower carb diet reduces the endogenous insulin requirement so delays the point where instability steps in. That also means it is a choice; we want to eat more we move to a more aggressive (but alas less stable) regime with injected insulin.
Hi @Finn I just had my endo appointment and predictably he didn’t have much to say about how long to expect the honeymoon to last–6 months to 10 years!–but there were two red flags that things might be transitioning:
trending increases in how much insulin is needed, and
significant postprandial spikes, i.e., going higher and staying higher for longer than would have been predicted before.
Those seem to be signs that your pancreas plus basal can’t take up the “slack” anymore. If you see those I’d get an appointment to revisit your labs. Mine seem stable so far, but it all could change tomorrow. Best of luck!
The end of the honeymoon period will show as a gradual increase in insulin needs, and the honeymoon period could last months or years.
Once it seems like the honeymoon period has ended for me, they’ll do another C-peptide test to confirm that my pancreas has indeed fully stopped working. They won’t do C-peptide tests before then, although I think it would be interesting to see how the results change over time.
Hi @Finn thanks for the update. Nice to hear there’s consensus on this. Interesting that they aren’t doing regular C-peptide tests for you. That approach makes sense; the results only matter to confirm the need to shift your treatment regime. But I’ve still had mine done with every visit, even in the 6-year period before I “officially” developed T1. (The most curious thing I discovered was that they didn’t do what you might initially expect, i.e., consistently vary inversely with my GAD antibody levels.)
You can drive yourself crazy trying to identify a point in time that is completely non-distinguishable here. Just keep doing your best. This journey has few milestones.
