Honeymoon Period vs No Honeymoon

[kkapo18]

Hi all.

Was just curious the transition coming out of the so called 'Honeymoon' phase.

A) How your insuin requirements changed
B) How much more difficult was the condition to manage?

I ask this as whilst I haven't done a C-Peptide test to determine how much insulin my pancreas is making, I'm only taking 12 units of Lantus and 1 unit of Novorapid before meals (which is pretty low) - Worth noting I do have less than 50g of carbs per day, so there is of course that aspect to factor in too.

Would be curious to hear everyones experiences!

 

[Antje77]

My insulin needs went up slowly for the first 4 or so years until steadying more or less for the past 3.
The amount of insulin I need still fluctuates from day to day, but it has stayed more or less the same on average for years now.

 

[kkapo18]

My insulin needs went up slowly for the first 4 or so years until steadying more or less for the past 3.
The amount of insulin I need still fluctuates from day to day, but it has stayed more or less the same on average for years now.

Great do you mind me asking how your basal insulin changed when you got out of honeymoon i.e from initially what the amount of units was to what it is now ? Appreciate you said it changes daily but curious just how much extra you needed.

Also noticed in your profile you use Tresiba. I only thought we had Levemir/Lantus here in the UK how do you find this insulin to be different to these?

 

[Ushthetaff]

Unfortunately when I was diagnosed you were type1or type 2 and that was it no C- Peptide tests etc in fact no blood sugar testing other than when you went to hospital and insulin regime was different then. I know this doesn't help to answer your question for which I apologise but I suppose it does show how far treatment of diabetes as a whole has come. Which is good news for “ newbies” and us old farts alike

 

[Antje77]

do you mind me asking how your basal insulin changed when you got out of honeymoon i.e from initially what the amount of units was to what it is now ? Appreciate you said it changes daily but curious just how much extra you needed.

We're all different, and the amount of insulin we use is highly individual, no matter if you're still in your honeymoon or not.
Some T1's (after honeymoon) need less than 20 units of total (basal and bolus) insulin a day, others need over 200, so the amount I take won't tell you anything about what to expect in your own future.

But for what it's worth, I'm on the higher end, likely because of some insulin resistance and being fat, and currently use between 80 and 100 units of basal and around 10 to 40 units of bolus throughout the day, on low carb.
Others use much less, even decades after ending the honeymoon and on much more carbs.

Also noticed in your profile you use Tresiba. I only thought we had Levemir/Lantus here in the UK how do you find this insulin to be different to these?

Tresiba is available in the UK, I'm in the Netherlands though.
I find Tresiba much more stable than the Lantus I used a very long time ago.
Which is good and bad: Good because it keeps me so steady without peaks and troughs, it makes no difference if I take it at 10 PM or 5 AM, it just keeps doing its thing.
Bad because it's so steady and very long acting. Any dose adjustment takes about 3 days to take full effect, useless for adjusting your basal for more or less active days, or illness, or holidays.

I've never used Levemir on it's own as a basal, I only use a little of it to top up the Tresiba on days I need more basal, so I can't comment on that.

 

[In Response]

Like @Antje77 my insulin needs went up slowly over a number of years.
After 8 years my basal increased to around 15 units. I think at the very beginning my daily dose of Lantus was about 4 or 5 units.
My daily basal dose varies depending upon exercise, illness and stress. The highest has probably been 20 units and, in the last year, the lowest has been about 10 units.
My bolus depends upon what I eat so the important factor is insulin to carb ratio which started at 1 unit for 20g carbs (this is significantly lower than the usual 1 to 10 ratio). It is now 1 unit to 12 or 13g. I do not limit my carbs so I can take more bolus than basal on some days.

However, we are all different, we need as much insulin as we need and higher doses are not to be feared. It is what your body needs and depends upon things such as weight, activity, stress, insulin resistance, etc.

I have never had c-peptide tests. The only way I knew my honeymoon period was over was when my basal needs stopped rising.

Regarding difficulty in managing my diabetes, there have been too many changes since I was diagnosed. For example, Finger pricking felt easier than CGM because I could ignore what happened to my BG between meals but my HbA1C is lower now which has nothing to do with honeymoon.

@kkapo18 why are you asking? Are you afraid of higher insulin needs or challenges.

 

[kkapo18]

Like @Antje77 my insulin needs went up slowly over a number of years.
After 8 years my basal increased to around 15 units. I think at the very beginning my daily dose of Lantus was about 4 or 5 units.
My daily basal dose varies depending upon exercise, illness and stress. The highest has probably been 20 units and, in the last year, the lowest has been about 10 units.
My bolus depends upon what I eat so the important factor is insulin to carb ratio which started at 1 unit for 20g carbs (this is significantly lower than the usual 1 to 10 ratio). It is now 1 unit to 12 or 13g. I do not limit my carbs so I can take more bolus than basal on some days.

However, we are all different, we need as much insulin as we need and higher doses are not to be feared. It is what your body needs and depends upon things such as weight, activity, stress, insulin resistance, etc.

I have never had c-peptide tests. The only way I knew my honeymoon period was over was when my basal needs stopped rising.

Regarding difficulty in managing my diabetes, there have been too many changes since I was diagnosed. For example, Finger pricking felt easier than CGM because I could ignore what happened to my BG between meals but my HbA1C is lower now which has nothing to do with honeymoon.

@kkapo18 why are you asking? Are you afraid of higher insulin needs or challenges.

Thats all great insight, so thank you for this.

My why is i'm curious just how much extra Insulin I might need as I fear the challenge will be higher insulin = more chance of hypos occurring, even with the low carb diet i'm on. As Antje says, it's all very individual but my ideal would be to take something like max 17 units basal but of course that is outside my control!

It was interesting to hear your insulin to carb ratio changing, may I also ask what your correction Insulin amount is i.e how much insulin would you need (and which type) to lower from lets say 10 to 7 for example? I haven't really gone above 10 since diagnosis so I don't really know what my correction would be! Reason i'm asking is to get an indicative idea from someone who has similar Insulin requirements currently which you seem to have.

 

[kkapo18]

We're all different, and the amount of insulin we use is highly individual, no matter if you're still in your honeymoon or not.
Some T1's (after honeymoon) need less than 20 units of total (basal and bolus) insulin a day, others need over 200, so the amount I take won't tell you anything about what to expect in your own future.

But for what it's worth, I'm on the higher end, likely because of some insulin resistance and being fat, and currently use between 80 and 100 units of basal and around 10 to 40 units of bolus throughout the day, on low carb.
Others use much less, even decades after ending the honeymoon and on much more carbs.

Tresiba is available in the UK, I'm in the Netherlands though.
I find Tresiba much more stable than the Lantus I used a very long time ago.
Which is good and bad: Good because it keeps me so steady without peaks and troughs, it makes no difference if I take it at 10 PM or 5 AM, it just keeps doing its thing.
Bad because it's so steady and very long acting. Any dose adjustment takes about 3 days to take full effect, useless for adjusting your basal for more or less active days, or illness, or holidays.

I've never used Levemir on it's own as a basal, I only use a little of it to top up the Tresiba on days I need more basal, so I can't comment on that.

All very interesting! As you say it appears this condition is extremely individualised.

Noted on the different aspects to Tresiba and Levemir, thing i'm personally more likely to split Levemir twice a day as I begin to incorporate gymming into my routine soon and might need that flexibilty!

 

[Antje77]

My why is i'm curious just how much extra Insulin I might need as I fear the challenge will be higher insulin = more chance of hypos occurring, even with the low carb diet i'm on. As Antje says, it's all very individual but my ideal would be to take something like max 17 units basal

You'll need the amount you'll need, and I wouldn't overthink it now.
With some luck, it will be just as with @In Response and myself, a gradual change until settling down.

Neither of us usually have much issues with hypos, even though I use much more insulin than they do.

may I also ask what your correction Insulin amount is i.e how much insulin would you need (and which type) to lower from lets say 10 to 7 for example? I haven't really gone above 10 since diagnosis so I don't really know what my correction would be!

The only times I go over 10 are after an unusual carb fest, in which case I still have lots of active insulin on board, or sometimes with intense exercise.
In both those cases, I couldn't tell you my correction factor because there are multiple things at play, both increasing and lowering BG at those times. So I just wing it based on experience.

You'll build up the experience as you go, and you'll learn by doing.
For me, there was nothing magical or sudden about the honeymoon ending, it was only after about a year of mainly the same insulin needs that I decided that mine was probably over.
The only C-peptide test I had was part of my diagnosing process, once diagnosed as T1 and on insulin it doesn't matter much if and how much insulin you produce, you adjust your insulin to your needs anyway.

 

[In Response]

It was interesting to hear your insulin to carb ratio changing, may I also ask what your correction Insulin amount is i.e how much insulin would you need (and which type) to lower from lets say 10 to 7 for example?

If my BG was 10 (and I had no active fast acting insulin on board or about to do intensive cardio exercise), my correction dose would be 1 unit.
Not sure what you mean by "which type" unless you are asking if I would take fast or slow acting insulin. Definitely fast acting for corrections.

 

[Juicyj]

Hi all.

Was just curious the transition coming out of the so called 'Honeymoon' phase.

A) How your insuin requirements changed
B) How much more difficult was the condition to manage?

I ask this as whilst I haven't done a C-Peptide test to determine how much insulin my pancreas is making, I'm only taking 12 units of Lantus and 1 unit of Novorapid before meals (which is pretty low) - Worth noting I do have less than 50g of carbs per day, so there is of course that aspect to factor in too.

Would be curious to hear everyones experiences!

Coming out of honeymoon means insulin requirements will increase as the pancreas reduces output, it also means t1d becomes easier to manage as you take on the role of providing the insulin vs a pancreas spluttering out insulin in fits and spurts, so it's a good thing to move on from this phase.

 

[In Response]

Coming out of honeymoon means insulin requirements will increase as the pancreas reduces output, it also means t1d becomes easier to manage as you take on the role of providing the insulin vs a pancreas spluttering out insulin in fits and spurts, so it's a good thing to move on from this phase.

I would be careful to say "will".
With so much of diabetes, it varies.
Thankfully, I did not experience the "spluttering" so I did not find "moving on" to be a good thing. It was just a continuation.

 

[Juicyj]

I would be careful to say "will".
With so much of diabetes, it varies.
Thankfully, I did not experience the "spluttering" so I did not find "moving on" to be a good thing. It was just a continuation.

Thanks but unsure how it could vary - can you give me an example ? Only every learned that insulin needs increase after this event has passed so would be interesting to know otherwise..

 

[In Response]

Thanks but unsure how it could vary - can you give me an example ? Only every learned that insulin needs increase after this event has passed so would be interesting to know otherwise..

I am only a sample of one so others may experience things differently.
My insulin needs increased during my 8 year honeymoon period (as I mentioned above).
Unlike how you expressed it, I experienced no "pancreas spluttering out insulin in fits and spurts". This is the part I refer to as varying from person to person.

However, as I learnt more and more about my diabetes and more technology became available so there were other changes in my management which were not to do with what my body was doing but what my brain was doing such as having access to CGM data.

 

[kkapo18]

I am only a sample of one so others may experience things differently.
My insulin needs increased during my 8 year honeymoon period (as I mentioned above).
Unlike how you expressed it, I experienced no "pancreas spluttering out insulin in fits and spurts". This is the part I refer to as varying from person to person.

However, as I learnt more and more about my diabetes and more technology became available so there were other changes in my management which were not to do with what my body was doing but what my brain was doing such as having access to CGM data.

Is there anything you did to 'prolong' the honeymoon period? 8 years is a lot. I'm hoping (provided I have any, not sure yet) to preserve as much as it as possible.

 

[In Response]

Is there anything you did to 'prolong' the honeymoon period? 8 years is a lot. I'm hoping (provided I have any, not sure yet) to preserve as much as it as possible.

I wish I knew
I did nothing to prolong the life of my insulin producing cells.

I think there are things that we are not able to influence such as age. Children seem to have much shorter honeymoon periods: their rise in insulin dose is more likely to be related to growth.

I have read that "stressing" the remaining insulin producing beta cells causes them to die off earlier.
This seems to be about not forcing them to produce too much insulin. For example, those misdiagnosed with type 2 may be prescribe glycacide (sorry, I have probably spelt that wrong) which works by forcing the beta cells to work harder). This can shorten the honeymoon period.
When we are unwell, we need more insulin so, there's more motivation for keeping ourselves healthy.

One thing which may be counter intuitive is eating low carb diet. Whilst his may lower the total amount of insulin required for the food we eat, it can increase insulin resistance so per gram of carbs, we would need more insulin.
I continue to eat a diet that is low in ultra processed food but not low in carbs. I eat a lot of fresh fruit and veg and cook most of my meals from scratch.

I am also very active which reduces my insulin needs but can make things more challenging because it increases the risk of hypos.

With my diet, my exercise and my genes, I am slim. Maybe this also helps to keep those beta cells working a bit longer?

 

[oldgreymare]

I can only describe my own experience. I was diagnosed after a multitude of tests (for everything!) by my GP after a long period of unexplained weight loss. Given my initial BG levels the GP ordered an Oral Glucose Tolerance Test (OGTT). Based on the results I was referred to an endocrinologist who ran c peptide and GAD65 antibody tests three months after starting insulin. These confirmed T1. Note this was done while working in Singapore. With hindsight I suspect I was LADA for 2 years further, but overall my insulin requirements for basal haven't altered much (used Lantus, Levemir, Tresiba) in 15 years. My bolus insulin requirements have increased as I seem to have insulin resistance with higher carb amounts.

 

[becca59]

Is there anything you did to 'prolong' the honeymoon period? 8 years is a lot. I'm hoping (provided I have any, not sure yet) to preserve as much as it as possible.

I have found the honeymoon period an absolute pain in the neck. I had the spluttering and ups and downs of needs. Not convinced that things have finally died 10 years down the line. I have the occasional notification it is still active. The less my pancreas is in operation the easier management is, I wish it would just put up its final white flag. Why hope for something to hang on that will fail eventually.

 

[kkapo18]

I have found the honeymoon period an absolute pain in the neck. I had the spluttering and ups and downs of needs. Not convinced that things have finally died 10 years down the line. I have the occasional notification it is still active. The less my pancreas is in operation the easier management is, I wish it would just put up its final white flag. Why hope for something to hang on that will fail eventually.

Because I feel like right now, i'm able to manage my blood sugars with minimal insulin and it's not up and down. Appreciate it's probably different for everyone as needs might change drastically from time to time.