FUDiabetes

Honeymoon Phase - LADA T1D

type-1
#1

Hey guys! I have learned SO much from you all over the last few days. Thank you. I am curious how long your honeymoon phase lasted and how did you know it was over (for those of you that went through this)? I am currently taking Toujeo and thyroid meds. No pre-bolous yet, but the endo is beginning to think it might be time. Any thoughts?

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#2

@johnstow, LADA honeymoons last longer than T1s. In most cases, the older you are diagnosed, the longer your honeymoon is likely to last. My son was diagnosed at age 11, and his honeymoon lasted a bit less than a year.

As a LADA diagnosis, you are likely to have several years of honeymoon. Imho, honeymoon is good and bad. It is good because you still get some self-regulation. It is bad because your beta cells sputter often, so your insulin needs can vary shockingly. We were someone relieved (with some wistful regrets) when my son got out of honeymoon.

How you recognize you are out of honeymoon: I am sure there are many possible signs. The three that were most significant to us where

  • the nice, someone flat, slightly curvy CGM curves gave we to zigzaggy plots with sharper angles,
  • his BG began requiring more precise adjustment with little forgiveness, and
  • he reached a somewhat stable TDD (Total Daily Dose of insulin) not far from (weight in lbs)/4. At the time, he was about 120 lbs and was using about 35 units/day.

Insulin needs vary, of course, from person to person. They are somewhat proportional to weight, but can be very different between two PWDs of equal weight. Obviously, this depends upon many factors, the least of which is not your daily carb diet:

  • at equal basal need, the more carbs you consume in the day as a percentage of your daily calories, the more insulin you consume, the higher your TDD;
  • your daily exercise routine has strong impact on your TDD, for your basal and bolus both. In and out of sports seasons, my son’s TDD varies by 50%.

With this understanding, the general equation for average insulin needs for someone out of honeymoon is:
TDD = 0.55 * (weight in kilograms) or
TDD = (weight in lbs)/4

Here is a link from UCSF that describes typical insulin needs:

https://dtc.ucsf.edu/types-of-diabetes/type2/treatment-of-type-2-diabetes/medications-and-therapies/type-2-insulin-rx/calculating-insulin-dose/

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#3

I was diagnosed at age 9 and my honeymoon lasted three to four months. The main difference between honeymooning and not was more stable blood sugar during the honeymoon stage (though I did still have highs regularly as well), a greater number of lows, and needing less insulin (I was never one of those who could stop insulin altogether). I was diagnosed back in the R and NPH days, so I suspect my honeymoon probably would have lasted longer had I been diagnosed during the era of tight control.

In my opinion the honeymoon is good and I have heard that tight control (especially in people with adult-onset Type 1) can extend the honeymoon; some, like Dr. Bernstein, claim the honeymoon can be extended indefinitely if one strives for ultra-tight control immediately after diagnosis. All studies I’ve read indicate that even relatively low levels of residual insulin production provide benefits such as lower A1c, more stable blood sugars, and fewer complications. Sure, there’s some variability from the beta cells, but I can tell you that for some of us, there’s significant variability even decades in just from hormones and being sensitive to varying activity levels! So that’s not a drawback in my books.

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#4

I read Bernstein’s book when my son was diagnosed. I could not in good conscience ask my 11-year-old to go on a 6-12-12- carb diet routine, although I wanted to do everything possible to keep him whole.

We did keep him on a tight control regimen, with a 70-120 range. His A1c when in honeymoon was never higher than 5.4%. He had months with >90% time in range. But it still did not stop him from growing out of honeymoon.

Being an adult, @johnstow, you can make that choice and decide to go LCHF (“Bernstein diet”). It potentially could prolong your honeymoon, although there is no actual peer-reviewed proof of Bernstein’s statement on honeymooning that I know of. But I may just have not read enough. There are many long-time diabetics on Bernstein’s who feel the same way as @Jen.

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#5

I’m not sure I actually agree with Dr. Bernstein on that honeymoon issue, which is why I put that he “claims” it can be extended forever.

I have mixed feelings on restricted diets for kids. I grew up with a restricted diet, both because I had food allergies and because back in those days diabetes diets were very strict. So for me it was no nuts, no potatoes, no sugary food or drink, no candy, “diet” versions whenever available, limited starchy foods like bread, an occasional small piece of cake with no icing or single scoop of vanilla ice cream. I don’t think it was a negative experience mor did any horrible long-term psychological damage, and I actually feel it’s helped me cope better now that I’m an adult. I actually have far fonder memories of my mom baking food that I could eat and sending it along than I think I would have of eating some random cupcake in the classroom every time there was a kid’s birthday. And the TYPEONEGRIT group has thousands of families with T1 kids who are happy and healthy. But I know there are many people who hated having a restricted diet and would vehemently disagree with me. Everyone has to find the method that works for them, and some people really are able to maintain tight control without reducing carbs, I’m just not one of them. :slight_smile:

This is actually what annoys me most about Dr. Bernstein and why I don’t follow every word he says the way some do. So many of his statements are based on his own opinion and not science. I’m a low-carber, but not a strict Bernstein follower (I don’t actually follow 6-12-12, for example, I’m more like 0-15-15).

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#6

Our son was diagnosed a little before he turned 2 and I would venture to say he hardly had a honeymoon – maybe 3 or 4 months? That’s typical for kids diagnosed younger, with the logic being that if it takes just a few months for their body to reduce their beta cell level to the point they’re symptomatic, they must have a more severe autoimmune assault in the first place.

Honestly, for us getting out of honeymoon was both sad and a relief. Sad because I know a longer honeymoon correlates to better outcomes, but happy because his blood sugar needs became much less erratic after that.

I don’t believe you can extend honeymoon “indefinitely” simply by putting people into very tight control. The fact is many honeymooners have very tight control and are essentially normoglycemic once they begin honeymooning, and yet that process eventually ends. Higher blood sugars can shorten honeymoon, though.

I think extending the honeymoon requires damping or halting the autoimmune attack and that we still don’t know how to do.

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#7

I think I’m still “honeymooning” 6 years in. I believe I still have a natural tendency, although extremely weakened, to return to normal levels… just require an awful lot of assistance with various types of insulin. I still show measurable fasting c-peptide… although I suspect that c-peptide level is not capable of increasing under demand or “challenge” (eating) as it is supposed to in a normal situation. I don’t know if I’ll ever see a distinct “end” to this

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#8

My honeymoon lasted about a year as well when I was 13 - my initial experience was similar to Jen - sugar was banned and only bread and potatoes was allowed
I was on a regular nph regime and for the first year my bg was always great even taking a very small dose ( I think my TDD was 8)
The doctor however told me to start on 240 grams of carb (24 portions as they called it) which was an insane amount of carbs and only to count potato and bread and ignore the green vegetables
I think even though it wasn’t controlled tightly it still instilled in me that sugar was bad and not part of my standard diet - which has been positive - i didn’t eat sugary drinks and haven’t since then and chocolate bars / cakes / cookies / ice cream and even fruit become treats as opposed to eating them every day like most of my friends were doing - which is not good for any child anyway
After the honeymoon - something also strange happened I put my dose up too quickly and I was taking 100 units of regular and 100 units of nph twice a day - never got the explanation from the doctor where it was all going as I wasn’t getting low sugar
I would say if you think your endo is wrong and it’s too soon then its all on your post eating sugar readings if your rising too high before the toujeo brings you down then it’s maybe time - try out a low carb diet and see if it improves and then maybe stick it out for a while - with low carb and getting your energy from protein the toujeo is probably enough to deal with that for a bit

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#9

Thank you, Michel for all of the information. Interesting to learn that adults have a longer honeymoon phase. I had not heard that before.

I totally agree that it kinda stinks right now bc my insulin needs vary sometimes day to day, sometimes week to week, and sometimes for a couple of months. You would think the honeymoon phase would be a positive thing. I have fluctuated between 8-12 units of toujeo which is a tiny amount. I have not had the the sharp zigzaggy plots, but I am finding that I am staying above 120 two hours after I have eaten. Sometimes I will climb to 180 and then stay at 140-160 for four hours and then quickly come down around that fourth hour to normal??? I am scared to move to prebolous insulin until I know that my pancreas is done to avoid the scary lows (already had 2 ER visits, one where I blacked out and seized) where I plummeted 95 points in less than 15 minutes without pre-bolous insulin).

I am going to read up on the TDD. I started to read it, but needed to be more focused on the article and less on football. Ha! Looks like a great read with my coffee. Thanks.

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#10

Ok. Looks like I have a book to read. Interesting to know. I have been on a low carb diet (no more than 8-12 carbs at a time since I was diagnosed. That combined with exercise has done the trick, but it takes discipline. I miss out on a lot of foods, many that are still good for you. I am not sure what 6-12-12 means, but I will read. I appreciate it, Jen and Michel.

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#11

I am sorry to hear that, Jen. I have two kids and I wonder about that often. I cannot imagine growing up as a kid and having a restricted diet. As an adult it is easier to understand (and complain about), but as a kid, UGH!

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#12

Oh my. Sorry for just figuring out how to respond inside of a thread. I thought replying to one thread would attach it at the bottom. I apologize…NEWBIE.

When you say high, are you talking 250 check your ketones high, or tight control highs?

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#13

Hi, Sam! Question…With the various types of insulins, do you have moments where you plummet for no reason even when you know you have covered your insulin and then some? I worry about my pancreas deciding to do its job in combination with insulin.

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#14

I don’t really have any significant lows that aren’t attributable to rapid acting insulins… so I guess to answer your question, no I don’t really experience any inexplicable plummets that I can’t figure out what caused them in hindsight

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#15

We had that multiple times while on honeymoon: we think we have properly dosed for a meal, then drop out of the sky because (I think) beta cells start up on the food peak.

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#16

6-12-12 = 6 carbs for breakfast, 12 for lunch, 12 for dinner-- the Bernstein diet :slight_smile:

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#17

Really sorry to hear about the ER and the seizure :frowning:

My guess is that, when you get there, it will be a relief, because things become more deterministic and more controllable. But that could be me :slight_smile:

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#18

Oh, gee. And here I thought he meant 6 kinds of carbs for breakfast, etc.:grinning:

I never had a honeymoon, or not that anyone remembers. I was diagnosed at 9 and was described as “brittle” from day one. I always feel this little pang of envy when I read about people honeymooning.

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#19

I don’t think you missed a thing! For the whole duration of the honeymoon, I was in anguish because I felt it was the last bit of normalcy left, and, when it went, my boy would reach the end of innocence.

It’s like putting the first scratch on a car. When it is finally there you feel so much relief. I did. The control was better but it also came with headaches. I am glad the angst is gone, now it’s our day-to-day business.

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#20

This. For me, it’s extending the “grieving” process of having this disease. I’m still honeymooning, diagnosed last year in April (at age 26). I’ll get a handle on things, have pretty tight control for a while, then things will progress, and then I’ll have to start all over again figuring new ratios out, etc. Along with that, I feel the loss of “normal,” again and again. There’s also the day to day frustration of dosing perfectly for something one day, then that same thing sending me low or high for no apparent reason. In some ways, I’m really looking forward to the honeymoon period ending. I got pregnant 4 months after diagnosis, and I really think that sped up the progression of things - I wasn’t on insulin pre-pregnancy, was during, and now am again; can’t eat almost anything without insulin. My c-peptide has dropped since diagnosis - I think 1.2 at last check? So getting close to being “low,” though I’m not sure what that means, as I’ve heard differing opinions on whether a c-peptide level tells you anything.

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