I have been doing a ton of reading about the “honeymoon phase.” No one really seems to have a definitive definition for it just that it seems to happen to T1D after they start insulin. This is clearly an area of the disease that isn’t to widely understood so would it be safe to say that some situations might be out of the normal characteristics of the honeymoon phase?
For example, my daughter is being followed for possible pre-symptomatic T1D with trial net, she will under go the auto antibodies test in April when she is 30 months old. Till than we are also monitoring her for reactive hypoglycemia/ ketotic hypoglycemia but while monitoring her we found some significantly elevated glucose readings. These readings were coming fairly often and ranged from 150-275 post prandial and fasting ranged from 95-125 but recently that changed. Its seemed like over night 3 weeks ago that her numbers began reading more “normally” not he fasting is only ever a little over 100 ( 82-108 range) and her post prandial are between 90-120. Could she have entered the honeymoon phase early? Could those high readings been a flook possibly caused by a virus and self healed, making my daughter lucky not to have to worry any longer ? Or could we just be that group of people who still make insulin erratically which is why we haven’t been officially diagnosed yet? Any one with any insight… sorry for the long post just confused by all the information there is out on this dark web haha
If it is diabetes then you are really just in the earliest stages. Keep in mind that we don’t really know how many types of diabetes exist. The medical community has boxed them into type 1, type 2, LADA and MODY but considering that there is so much variation in the disease from person to person the likelihood is high that there are many forms.
For instance many people who are diagnosed with LADA will have the initial symptoms that lead to a diagnosis but may not need any exogenous insulin for years and while children usually have a very short honeymoon or are reported to go from being fine to severe DKA (like myself) this is not the only way for it to happen. You will know more after the Trialnet testing and can go from there.
It’s not so much about when you start insulin, it’s that in a lot of cases the ability to produce your own doesn’t just shut down all at once but can fizzle and sputter for a while even after you’ve become symptomatic. “Honeymoon” makes it sound like a good thing, but actually it can be a big PIA when you’re trying to get balanced on insulin and you keep getting unexplained lows because your endogenous production kicked in. You seem to get that further on in your OP, but I thought I should clarify this b/c not everyone reads so thoroughly online…
The definition of honeymoon seems to vary depending on the source. I use the definition given to me by Dr Stephen Ponder, a well-known pediatric endo. In a child, insulin needs of less than .5 unit per kilogram of body weight is considered honeymooning. Note that is after diagnosis. Honeymoon, if there is one, begins after diagnosis & the start of insulin therapy. The beta cells don’t just die off suddenly & completely, although symptoms can certainly appear suddenly. Personally, I believe my daughter shows signs for at least 2 years prior to her diagnosis. I can’t prove that, because Type 1 was not even on my radar & I certainly didn’t think to check BG, but I knew something was not right. Her symptoms would last a few weeks to a month, then disappear, only to return a few months later.
You may have posted at some point & I missed it. Is there a reason you’re waiting to test antibodies?
Or could we just be that group of people who still make insulin erratically which is why we haven’t been officially diagnosed yet?
That seems like a pretty good guess.
“Honeymoon phase” just means the initial period of type 1 where the body is still able to make some insulin but not always enough.
She is being followed for several spontaneous episodes of hypoglycemia ut why monitoring that we found the elevated blood sugars, sometimes as high as 275 but they would eventually correct themselves. During this time she had excessive thirst and urination… her personality also changed she became so cranky. Trial net thinks this could be an early find but were not sure