Honeymoon Phase - Still Going...

[danielmg]

Hello All,

I was wondering if anyone has had similar experiences with their "honeymoon period" after diagnosis, in terms of duration and what the initial impact is when this phase is "over".

I still seem to be in this period almost 3 years after diagnosis, but there have been intermittent times when it appears I would be coming out of this (i.e. increased insulin doses required for a few weeks). If anything, I now have unusual results that are counter-intuitive to normal type 1 behaviour. For example, I have a copied in a couple of the most recent results that highlight this:

- Breakfast (45g Carbs). Pre BG = 4.9 (0 units NovoRapid) / Post BG = 4.3 (2hrs later)
- Breakfast (40g Carbs). Pre BG = 5.9 (1 unit NovoRapid) / Post BG = 4.1 (2hrs later)

For these 2 results as well, I did not take any Glargine the night prior (would only take 1 unit atm anyway), and did not do any strenuous activity in the 2hrs between testing.

I would be interested to hear any thoughts if you've had similar experiences or any advice.

Thank you.

 

[helli]

My insulin dose increased gradually over about 8 years so I always thought that was the length of my honeymoon period.
However, during that time, I always needed some insulin and the ups and downs reflected more my energy levels - if I exercised a lot, I would half my basal dose and if I was ill I could add 50%.
These ups and downs continue, about 8 years later but the base level of insulin has remained stable.

A few thoughts about your situation
- Has your weight or diet changed over this time? Loss of weight and significant reduction in carbs can influence insulin requirements
- How was your diagnosis confirmed? For me it was a very unscientific "you are too slim to have type 2" (and let's not derail this thread with the assumptions made there) but, nowadays, GA and c-peptide tests are more common. I just winder if you definitely have Type 1.
- How are you managing your condition? I ask because, if you are mentally comfortable in adjusting your insulin doses, your question may be based on curiosity but, if it is getting you down, I would suggest you discuss this with your diabetes team and get some assistance.

 

[danielmg]

My insulin dose increased gradually over about 8 years so I always thought that was the length of my honeymoon period.
However, during that time, I always needed some insulin and the ups and downs reflected more my energy levels - if I exercised a lot, I would half my basal dose and if I was ill I could add 50%.
These ups and downs continue, about 8 years later but the base level of insulin has remained stable.

A few thoughts about your situation
- Has your weight or diet changed over this time? Loss of weight and significant reduction in carbs can influence insulin requirements
- How was your diagnosis confirmed? For me it was a very unscientific "you are too slim to have type 2" (and let's not derail this thread with the assumptions made there) but, nowadays, GA and c-peptide tests are more common. I just winder if you definitely have Type 1.
- How are you managing your condition? I ask because, if you are mentally comfortable in adjusting your insulin doses, your question may be based on curiosity but, if it is getting you down, I would suggest you discuss this with your diabetes team and get some assistance.

Thank you for the reply @helli
- My weight has remained more or less the same since diagnosis. Strangely I find it difficult to put on weight, and have been told in the past through different testing that I have a high metabolic rate. My diet has changed quite a lot since diagnosis in terms of portion management, but I am strict on eating healthily and eat mainly the same foods on a consistent basis. I don't seem to eat as much at the moment whilst I am not at work, but on average ~160-180g of carbohydrates per day. I probably have lost a small amount of weight in the last few months as a result, which may be contributing to the need for less insulin overall.
- I was initially referred from GP for further testing after extremely high ketone levels in urine sample. From then, I had multiple blood and blood gas samples taken to confirm diagnosis. I had my GAD antibody and CPEP levels tested again last year due to these concerns, but they still fell into the bracket of T1D (same as when diagnosed). Before these results they were debating as to whether it may be MODY ot Type 1.5. I am due my annual review next month, so likely will ask for these to be repeated (possibly further tests if needed).
- I am managing ok with management, but I have the same routine mostly every day. I have however have just had Freestyle Libre added to my prescription, plus a change in BG test strips so I can use the same libre monitor for this. I am certainly not complaining a not requiring high doses of insulin thus far, but is very frustrating to have low BG post meal when I haven't taken any insulin, even with what may be considered a high carb. meal. I don't understand how this is normal behaviour for someone who doesn't have diabetes, let alone someone who does.

 

[trophywench]

So you know after brekky (or indeed any food whether you've bolused for it or not) ie straight after, not an hour or 2 hours after - what does the Libre sensor graph say your BG does?

Presumably all your Libre readings are shared with your clinic? How often are you downloading them?

 

[helli]

Good luck with your review next month.
It is your chance to ask questions so take advantage of that and take your data with you.

My only thought about going lower after eating is regarding the timing of your insulin.
I was taught to inject 15 minutes before eating but realised this depends on what I eat. If I eat something which will take longer to be digested (e.g. pizza, curry, pasta), I will go low immediately after eating and then my BG could rise for the next 4 or 5 hours. Having a pump, this is easy to manage. It is possible when injecting with split boluses (one at the "usual time" and another an hour later).

 

[danielmg]

So you know after brekky (or indeed any food whether you've bolused for it or not) ie straight after, not an hour or 2 hours after - what does the Libre sensor graph say your BG does?

Presumably all your Libre readings are shared with your clinic? How often are you downloading them?

I've only used the Libre for a 4 week trial, but there would normally be a mixture of sharp peaks with quick drops or almost flat levels between pre and post meal. I did noticed as well that during sleep my BG levels would often go to close to or drop below 4.0, even if I had correct with carbs to avoid that very thing.

I haven't as yet started using the Libre again, but have just collected my prescription and will have data to show at my annual review next month. I think the LibreView web app is very good and will probably study this data before going as well.

 

[danielmg]

Good luck with your review next month.
It is your chance to ask questions so take advantage of that and take your data with you.

My only thought about going lower after eating is regarding the timing of your insulin.
I was taught to inject 15 minutes before eating but realised this depends on what I eat. If I eat something which will take longer to be digested (e.g. pizza, curry, pasta), I will go low immediately after eating and then my BG could rise for the next 4 or 5 hours. Having a pump, this is easy to manage. It is possible when injecting with split boluses (one at the "usual time" and another an hour later).

Yes it's a bit of a minefield with all of the different variables to consider with injections. I know this is stating the obvious, but when I have a meal with no insulin and my 2hr post BG is lower than pre-meal, I must still be producing insulin naturally. It is just very strange that it would drop so much, or that I would need to eat even more carbs than I could manage.

 

[trophywench]

Well you can share the Libreview App info automatically with your clinic! Now if you go to the 'sharing' screen you can put the Clinic name in it cos some are already registered on it when they have more than the odd Libre user, and add them, so they can study it before you get there (they aren't supposed to do so until they ask you if they can though) then you can both raise the points you both want to make and hopefully this leads to closer and more useful collaboration and better results.

 

[nonethewiser]

For these 2 results as well, I did not take any Glargine the night prior (would only take 1 unit atm anyway), and did not do any strenuous activity in the 2hrs between testing.

Not alone, Northerner doesn't take background insulin & been diabetic for least 10years.

 

[Annemarie]

Hello All,

I was wondering if anyone has had similar experiences with their "honeymoon period" after diagnosis, in terms of duration and what the initial impact is when this phase is "over".

I still seem to be in this period almost 3 years after diagnosis, but there have been intermittent times when it appears I would be coming out of this (i.e. increased insulin doses required for a few weeks). If anything, I now have unusual results that are counter-intuitive to normal type 1 behaviour. For example, I have a copied in a couple of the most recent results that highlight this:

- Breakfast (45g Carbs). Pre BG = 4.9 (0 units NovoRapid) / Post BG = 4.3 (2hrs later)
- Breakfast (40g Carbs). Pre BG = 5.9 (1 unit NovoRapid) / Post BG = 4.1 (2hrs later)

For these 2 results as well, I did not take any Glargine the night prior (would only take 1 unit atm anyway), and did not do any strenuous activity in the 2hrs between testing.

I would be interested to hear any thoughts if you've had similar experiences or any advice.

Thank you.

@A 20339 My experience will not help anyone but I’m sharing it as it’s totally ridiculous. After my diagnosis in January 2019 I needed low doses of Novarapid and Lantus, my eyesight took the biggest hit and they were remediated by 2 operations so I settled into a reasonable pattern. Then my ankle broke in 4 places in January this year and since I’ve had to double each dose (at least) to stay in a reasonable band. I have now been partly mobile for the last 2 months using crutches so not much exercise, I can’t walk for more than 10-15 minutes on a good day. I still need the extra doses and some days even higher, it’s been hard to accept and funnily stamping my foot and saying, “It’s not fair!” didn’t help at all! What else can I do other than accept that with less activity I need less food/carbs and move on. I try to be me not just A Diabetic.

 

[Inka]

Hi @danielmg Interesting to read. I had what my consultant called an atypical onset of Type 1 and could not take insulin sometimes early on. I also started on a low basal dose of 1 unit. My honeymoon lasted for years, then things changed ever so slightly and that lasted a few years more.

I recently had my antibodies tested and have had Type 1 confirmed. My consultant said that there are a number of types of Type 1, some having a slow progress, some very fast.

With regard to the drop you have when you don’t bolus and eat, I got that too. I was told it was my own pancreas making some insulin but that it made too much, too late as part of its erratic decline in function. I chose to still bolus for my meals because I didn’t want to risk any spikes. I then just ate a few extra carbs if needed.

 

[danielmg]

Well you can share the Libreview App info automatically with your clinic! Now if you go to the 'sharing' screen you can put the Clinic name in it cos some are already registered on it when they have more than the odd Libre user, and add them, so they can study it before you get there (they aren't supposed to do so until they ask you if they can though) then you can both raise the points you both want to make and hopefully this leads to closer and more useful collaboration and better results.

Thank you @trophywench this is very helpful. I'll look into it before my AR.

 

[danielmg]

Not alone, Northerner doesn't take background insulin & been diabetic for least 10years.

That's interesting to note, thank you. It's almost as if I should be using one or the other atm. Either a higher basal dose or no basal dose and stricter use of bolus insulin pre-meals.

 

[danielmg]

Hi @danielmg Interesting to read. I had what my consultant called an atypical onset of Type 1 and could not take insulin sometimes early on. I also started on a low basal dose of 1 unit. My honeymoon lasted for years, then things changed ever so slightly and that lasted a few years more.

I recently had my antibodies tested and have had Type 1 confirmed. My consultant said that there are a number of types of Type 1, some having a slow progress, some very fast.

With regard to the drop you have when you don’t bolus and eat, I got that too. I was told it was my own pancreas making some insulin but that it made too much, too late as part of its erratic decline in function. I chose to still bolus for my meals because I didn’t want to risk any spikes. I then just ate a few extra carbs if needed.

Thank you @Inka . I think I may be on a similar path to yourself in terms of slow progression of T1D. I often still side with caution as well and have even just 1 extra unit of insulin to avoid a potential high BG. Although I still have too many low BG's (or very close to) for my liking.
During my last annual review the consultant considered sending a blood sample(s) to the specialist laboratory in Exeter for further specific genetic testing. I've copied in their site address below, which is interested to read and know there are far more types of diabetes than the most commonly diagnosed:

Rare Types of Diabetes // Diabetes Genes

 

[grovesy]

Well over 50 .

 

[everydayupsanddowns]

Hope the extra checks shed some light on your situation @danielmg

 

[danielmg]

Hope the extra checks shed some light on your situation @danielmg

Thank you.