Honeymoon phase and preserving remaining beta cells


#1

Hey everyone I am new to this forum. Briefly 21 month daughter was recently + for insulin antibodies with H1Ac at 5.8. Currently in honeymoon phase not requiring insulin to maintain her glucose levels to stay optimized. C-peptide levels currently normal. I wanted to know for your experience typically how long have people with T1DM remain parital remission and if there is any literature about preserving beta cells during honeymoon phase. My currently peds-endo stated that there is no validity that proves that giving exogenous insulin preserves the residual functioning beta cells.
Would love to get feedback!

Thanks
Georgy


#2

The honeymoon phase varies significantly from person to person. YDMV.


#3

The scientists are working on this, but I’m not sure that there is anything yet to slow the progression of Type 1 once it starts. Ask this question on GLU. Someone there would know what the latest research says on this subject.

https://myglu.org/myglu


#4

My understanding is that the honeymoon phase starts once someoen is diagnosed and begins to need insulin. It’s a period when beta cells temporarily recover and are able to produce some insulin for a short time, but people may or may not be able to actually stop taking insulin (many children can’t). I was diagnosed at age 9 with very high blood sugar and ketones, and my honeymoon began about a month after diagnosis and lasted several months, but I was never able to stop taking insulin.

It sounds like your daughter hasn’t actually developed full-fledged Type 1 yet but only has positive antibodies, and therefore you have a chance to intervene far before most others. I would maybe contact the JDRF and see if they can connect you with anyone—I know they’re doing a lot of research on how to prevent and/or slow down the progression of Type 1.


#5

Thank you for your response I’ll definitely look into it


#6

Thanks Jen for your response. So you’re saying that you required insulin despite being on the honeymoon phase?


#7

Yes. I had symptoms of diabetes for a few weeks, and by the time my parents took me to the doctor my blood sugar and ketones were extremely high (I’m not sure if I was actually in DKA at that point, but certainly close). I was sent directly to emergency and spent four days in the hospital to get stabilized, then was sent home on insulin. I still have my logbook from this time, but not my hospital records. For the first few weeks my blood sugars were extremely high as insulin doses were adjusted, and then a month after my diagnosis I started to have very few highs and lots of lows and insulin doses had to be adjusted down, but the lowest it reached was about 10 units per day. This lasted for two or three months, then I began having constant and extreme highs and insulin doses had to be raised again, which was the end of my honeymoon.


#8

Look into trailnet, it may be helpful in your case.


#9

Technically, one has to: 1. Be diagnosed with diabetes, and 2. Be taking exogenous insulin in order to be considered in the honeymoon phase.

I have never heard of anyone with Type 1 diabetes who does not require treatment with exogenous insulin, even if it is only a very low dose of basal insulin only.


#10

thanks!


#11

In the years since my daughter’s dx, I’ve met many, many wonderful parents in varying stages of living with T1. Several have had children dx’d very early, either through participating in TrialNet or just luck. The same basic approach to initiating insulin was followed with all of them. It was not based so much on A1C as on random BG values, particularly post meal values. Insulin was begun when more than 1 reading over 200-250 was reported. The reason given was safety. In the early stages of T1, reactive hypoglycemia is common. In all of those cases, treatment began with small doses of basal insulin only (Lantus, Levemir or in a few cases, NPH).

I have seen studies & expert opinions state that beginning early treatment with insulin can not only help preserve the remaining beta cells, but also result in better “control” over the long-term. All of the ped endos I’ve spoken with agree with that. The truth is that many ideas related to T1 are unproven, or at least not proven beyond beyond a doubt. The answer to too many questions is simply “we think” or “we don’t know” I may have some links still saved on my pc, but I’ll have to search through them. This link is the only one saved to my phone.

http://www.google.com/url?q=http://www.asped.org/chapters/2-Phases%20of%20type%201%20diabetes%20in%20children%20and%20adolescents.pdf&sa=U&ved=0ahUKEwjM-onM0LHOAhUi6oMKHQhqBhYQFggfMAg&sig2=0wwDiiNYXWjXi33HpQHk1g&usg=AFQjCNGg3Js_ptgq2nKZ1nQLStQTEnX0Eg

From the link above:
" The partial remission phase may be defined as an insulin requirement of<0.5 units/kg of body weight per day and HbA1c<7% (51). Recently, insulin dose adjusted HbA1c, defined as HbA1c (%)+4 × [insulin dose in units/kg/24 h] has been proposed as a more specific measure of remission (53, 54). The phase commences within days or weeks of the start of insulin therapy and may last for weeks to years. During this period, blood glucose levels are frequently stable within the normal range, despite fluctuations in diet and exercise. Ketoacidosis at presentation (55), and younger age at diabetes onset reduce the likelihood of a remission phase (53, 56). Intensive therapy leads to better metabolic control and a reduction in insulin requirements (57). While there may be a transient effect of intensive therapy on β-cell function, the effect is not sustained (58). Nevertheless, preserving β-cell function decreases the risk of developing vascular complications and severe hypoglycemia (57, 59). Most people with recent onset type 1 diabetes retain some β-cell function that may persist for decades following diagnosis (60, 61)."

FWIW, my daughter was dxd at age 11 with a BG (discovered by me) of 593. In the ER, her labs showed a BG of 623 & A1C of 13%, positive for 3 of 4 antibodies. (It’s been so long I honestly don’t remember which 3.) We were very fortunate. She was close to but not yet in DKA. For about 14 months we enjoyed the honeymoon. I say “about” because it didn’t just suddenly end. It was more a gradual sputtering. For a few months, her TDD (total daily dose, basal & bolus combined) was only 4 units. The honeymoon was never strong enough for her be without injected insulin. Adjusting insulin during that time could be challenging, but nothing like the unforgiving beast of T1 we’ve lived with since.


#12

@tiaE
This is exactly what I needed to read. Thanks so much for taking the time to share with me your story and this insight. i havent checked her postprandial glucose levels as I have been just checking her morning glucose (before breakfast) to be ranging 98-103 so far. I will check postprandial to see where shes at (i am partly hesitant just because I cant bare to read the number that pops up).


#13

They recently updated the diagnostic criteria for T1D, defining the start of disease as the presence of 2 autoantibodies, because nearly 100 percent of people with two autoantibodies will go on to develop symptomatic T1D. As such, there is a whole cohort of people who are now considered T1D but have normal glucose tolerance tests. There are a number of trials going on to see if they can delay the onset of symptoms in this group, one of which is delivering insulin orally to the gastrointestinal tract. From what I understand, that trial has some preliminary, weakly positive results, though it’s not phase III, so obviously not definitive.


#14

is this based on a pubmed article or I can just google this diagnostic criteria? I saw the ted talk on the guy from chile finding insulin being produced in the gut. #amazing


#15

I found this listing on ClinicalTrials.gov https://clinicaltrials.gov/ct2/show/NCT00419562
This is old, but they were proposing new diagnostic criteria from JDRF and ADA as far back as last year. Presence of two autoantibodies is essentially Stage 1 of T1D: http://care.diabetesjournals.org/content/38/10/1964


#16

@Georgy for many, the fasting is the last to go. The body does a fairly decent job of maintaining BG in the absence of food. It’s the post meal BGs that are most telling early on. I know a few parents who were convinced they were seeing early stage T1, but couldn’t get drs to test anything other than fasting BG. These parents resorted to carb loading, then taking the child to the ER for a dx.


#17

I just hope to G-d that this initial stage during which one does not require exogenous insulin will not be termed “Pre-Type 1 Diabetes”… :unamused:


#18

@tiaE
I totally understand. I will add a few random postprandial glucose checks to see where shes at. Then will discuss peds-endo if she wants to add lantus and novolog coverage. But since her diagnosis but having her on carb restrictions- along with the whole family household. We can all use it :slight_smile:


#19

Some refer to it as prediabetes because that’s what it is. The newer trend is staging. Insulin isn’t required until stage 3.