LADA ‘honeymoon phase’

[Evergreen]

Hi everyone!

Posted for the first time a little while ago and got some great advice, I’m ever so grateful!

Short update: newly diagnosed LADA and on basal insulin only at the moment.

From reading up on LADA/type 1 diabetes, I believe I’m in the so-called ‘honeymoon phase’, but to be honest it doesn’t feel like a honeymoon!

I was just wondering what other peoples experience was on this phase.

I seem to produce quite a bit of insulin (or be more sensitive to insulin during the afternoon evening), which is obviously a good thing except that it makes it difficult to plan for it. Right now, I’m either ok overnight and in the morning, but experiencing hypos in the afternoon/evening (on 12 units) or I’m ok during the afternoon/evening and high during the night and morning (on 11 units).

I’ve spoken to the team about this and what the options are. I might be able to have a half unit pen, but they are checking. They are reluctant to add fast acting insulin at the moment as they are worried this would cause more hypos as my levels do go down pretty fast after eating. They have spoken to me about going onto a different type of insulin which I can use twice a day and adapt to exercise etc. I think this will be my next choice.

I know this is just a phase and my insulin needs will change overtime, but I keep reading that this phase is supposedly easier to manage and blood glucose levels are more stable. I’m finding this phase pretty difficult to manage though as I literally have no clue what my body is doing and was just hoping to hear how others have experienced this phase?

Thank you in advance!

 

[Finn]

I'm right there with you in the honeymoon phase and I find my insulin needs are erratic.

Diabetes is hard enough, but when you can't predict whether you'll need 50% insulin or 150% insulin, it's really frustrating.

One thing that helped me smooth out the hypos and hypers was splitting my basal dose between bedtime and breakfast. This worked for me (I started with a 50/50 split and nudged each dose up or down as I saw patterns).

The only reason I can see them calling it the 'honeymoon phase' is because your body is still producing some insulin so your overall insulin need are lower than they will be after the phase. But when the self-produced insulin comes inconsistently, it honestly feels like anything other than a honeymoon... or maybe a really bad honeymoon.

Sorry, no advice except to say that, yeah, it sucks.

 

[Evergreen]

I am so sorry you are experiencing the same, although it’s nice to have some validation! After reading some recommended books I was starting to feel like a medical mystery!

Very interesting about the splitting dose, that’s the next thing my diabetes team wants to try. Hoping that’ll provide a little relief! Are you just on basal at the moment too? Many other type 1.5’ers seem to be on mealtime insulin but I can’t see this working for me at the moment.

Thanks so much for the reply, it’s nice to feel you are not alone (even when it sucks!)

P.s. noticed you are a Brit living in Germany, I’m a Dutchie living in the UK! 🙂

 

[Finn]

I'm not sure if it's because Germany does things differently, or if I'm producing less insulin than other LADAs, but I was put on both basal and bolus right away.

I was diagnosed just over a year ago in hospital with DKA. Literally as soon as I came off the insulin drip, I was on basal and bolus. The nurses played around with different doses and insulin types and once they found what worked for me, I started doing my own injections. Initially, my bolus injections were fixed doses and when I noticed post-meal patterns of highs or lows, I adjusted my doses.

Soon after being discharged I was taught carb counting and got a CGM and those have both made a big difference.

I started splitting my basal because x units would make me go low at night and perfect during the day, but x-1 units would make me go high during the day and perfect at night.

I don't take much bolus (usually 3-6 units a meal) and I requested half unit pens. That's given my meals quite a bit more flexibility.

 

[rebrascora]

If it is any consolation, my husband and I both came down with what was almost certainly Norovirus on our honeymoon, so the analogy fits for me with diabetes. With some people, their endogenous insulin production does round the edges off and make it easier, but for others like ourselves posting here our pancreas spits out insulin in fits and spurts and makes things less predictable.
@Evergreen Which basal insulin have they started you on? It sounds like they are talking about swapping you to Levemir which is split into a morning and evening dose and you can adjust them separately according to what your body needs. I absolutely love my Levemir for it's flexibility in that respect. I need a lot less basal insulin during the night than I do during the day. My doses are currently 24 units in the morning and just 4 units at night.... and I still hypoed twice last night, so another reduction is on the cards for tonight. Last week I was going high during the night and had to adjust the night time dose up a bit but my daytime dose is pretty stable these days. Exercise during the day drops my levels overnight quite a lot, so my evening dose sometimes needs daily adjustment. No other basal insulin allows for such regular adjustment.... Did I mention I LOVE my Levemir .

Anyway, hang in there with the honeymoon period. It does get easier but looking back I think a lot of it was also my inexperience. Having the right insulins and learning how your body responds to them takes time and trial and error/improvement. I'm 3.5 years down the line with it and honeymoon ended at about 2 years.... My first Covid vaccine may have triggered the final stage as my basal insulin needs doubled during the next 3 months after that and have been stable give or take a few units adjustment for exercise since then. What I will say is that I am now very confident in managing my diabetes.... even when I have 2 hypos in one night and I live alone. I used to live in terror of having a nocturnal hypo but now that I have experienced a few, I know my body will wake me up and I can manage them well and I sleep soundly and don't worry anymore.... other than obviously adjusting my insulin to try to prevent them.

Anyway, you are definitely not alone in finding the honeymoon period anything but smooth sailing, so don't worry about not being normal.... What you will learn from this forum is that there is a VERY broad spectrum of what is "normal" with anything diabetes related.

 

[Evergreen]

I'm not sure if it's because Germany does things differently, or if I'm producing less insulin than other LADAs, but I was put on both basal and bolus right away.

I was diagnosed just over a year ago in hospital with DKA. Literally as soon as I came off the insulin drip, I was on basal and bolus. The nurses played around with different doses and insulin types and once they found what worked for me, I started doing my own injections. Initially, my bolus injections were fixed doses and when I noticed post-meal patterns of highs or lows, I adjusted my doses.

Soon after being discharged I was taught carb counting and got a CGM and those have both made a big difference.

I started splitting my basal because x units would make me go low at night and perfect during the day, but x-1 units would make me go high during the day and perfect at night.

I don't take much bolus (usually 3-6 units a meal) and I requested half unit pens. That's given my meals quite a bit more flexibility.

Ah I see, a little bit different to me! I was (mis)diagnosed in pregnancy, first gestational diabetes, type 2 when it didn’t go away after pregnancy and then finally LADA more recently.

It’s comforting to know that you are using both basal and bolus even though you are still producing insulin yourself. I have a few things to try first, but can talk to the team about adding some mealtime insulin if these options don’t work.

 

[Evergreen]

If it is any consolation, my husband and I both came down with what was almost certainly Norovirus on our honeymoon, so the analogy fits for me with diabetes. With some people, their endogenous insulin production does round the edges off and make it easier, but for others like ourselves posting here our pancreas spits out insulin in fits and spurts and makes things less predictable.
@Evergreen Which basal insulin have they started you on? It sounds like they are talking about swapping you to Levemir which is split into a morning and evening dose and you can adjust them separately according to what your body needs. I absolutely love my Levemir for it's flexibility in that respect. I need a lot less basal insulin during the night than I do during the day. My doses are currently 24 units in the morning and just 4 units at night.... and I still hypoed twice last night, so another reduction is on the cards for tonight. Last week I was going high during the night and had to adjust the night time dose up a bit but my daytime dose is pretty stable these days. Exercise during the day drops my levels overnight quite a lot, so my evening dose sometimes needs daily adjustment. No other basal insulin allows for such regular adjustment.... Did I mention I LOVE my Levemir .

Anyway, hang in there with the honeymoon period. It does get easier but looking back I think a lot of it was also my inexperience. Having the right insulins and learning how your body responds to them takes time and trial and error/improvement. I'm 3.5 years down the line with it and honeymoon ended at about 2 years.... My first Covid vaccine may have triggered the final stage as my basal insulin needs doubled during the next 3 months after that and have been stable give or take a few units adjustment for exercise since then. What I will say is that I am now very confident in managing my diabetes.... even when I have 2 hypos in one night and I live alone. I used to live in terror of having a nocturnal hypo but now that I have experienced a few, I know my body will wake me up and I can manage them well and I sleep soundly and don't worry anymore.... other than obviously adjusting my insulin to try to prevent them.

Anyway, you are definitely not alone in finding the honeymoon period anything but smooth sailing, so don't worry about not being normal.... What you will learn from this forum is that there is a VERY broad spectrum of what is "normal" with anything diabetes related.

Hello!

I am so sorry to hear about your honeymoon I suppose it might have prepared you for the diabetes honeymoon phase but it would have been nice not to have to deal with norovirus during your actual honeymoon!

I’m currently on 11 or 12 units of Abasaglar and I think you are right that they are thinking of swapping me to Levemir, so good to hear that works so well for you. I’m keeping my fingers crossed! They first want me to try and swap over to injecting before bed to see if that might make a difference, unsure how to do this though and stupidly forgot to ask!

How interesting that you are on such different doses for daytime and evening! I’m not sure the difference is that big for me but I can definitely tell that exercise makes a big difference!

Thank you again for your reply, it really makes a difference to know that you are not the only one!

 

[Finn]

Ah I see, a little bit different to me! I was (mis)diagnosed in pregnancy, first gestational diabetes, type 2 when it didn’t go away after pregnancy and then finally LADA more recently.

Ah, yeah. It sounds like we had very different entrances to diabetes world.

I was in DKA with a blood sugar of 30+, so it was pretty clear I was Type 1. At least I made the diagnosis easy for them!

We'd had our second Covid vaccine a week before I went to hospital, so we had explained away my symptoms as being vaccine side effects, when in fact they were DKA.

I’m currently on 11 or 12 units of Abasaglar and I think you are right that they are thinking of swapping me to Levemir, so good to hear that works so well for you. I’m keeping my fingers crossed! They first want me to try and swap over to injecting before bed to see if that might make a difference, unsure how to do this though and stupidly forgot to ask!

How interesting that you are on such different doses for daytime and evening! I’m not sure the difference is that big for me but I can definitely tell that exercise makes a big difference!

I'm currently on 5 units Abasaglar in the morning and 3 units at bedtime.

On diagnosis, I was told to do 9 units (I think) at bedtime. I brought it down to 8 and then 7 over the first few weeks, then after realising I was having regular night time hypos, I split to 4 morning/4 evening, then made gradual adjustments, settling on 6 morning/4 evening and recently reduced them both to 5 morning/3 evening as I've been exercising more.

I'm toying with dropping my evening dose to 2, but want to be sure I'm making the change based on a pattern, not just one-offs (I also want to be sure I'm keeping up with my new exercise routine before make adjustments for it 😉).

I usually increase my morning dose by a unit or two as monthly hormones come into play. For me, that's usually a day or two before my period starts and I can return to my normal dose once it ends. This seems to work for me, but I'm still working out the patterns.

It's an ongoing, neverending process of noticing trends and making adjustments and the honeymoon period seems to throw another spanner in the works.

They first want me to try and swap over to injecting before bed to see if that might make a difference, unsure how to do this though and stupidly forgot to ask!

What is it about injecting before bed that you're unsure of?

I set an alarm on my phone for 9.15p and inject then. It doesn't need to be done with food if that's what you're unsure of.

 

[Evergreen]

That’s very interesting to hear you are splitting abasaglar, I was made to believe that you couldn’t split this as it works for 24 hours.

I think my period might also be throwing a spanner in the works, but I’ve only had one since starting insulin so unsure about patterns!

About the changing injection to evening, sorry I wasn’t very clear! What I meant was that I’m unsure about how to change it from morning to evening. I think they suggested for the ‘changeover’ day to do 5 units in the morning and then 11 in the evening but that seems a lot?! Surely if the abasaglar works for 24 hours I then will have 16 units in my body overnight? I also know I can’t just skip the morning dose and inject in the evening as it would mean being without insulin for most of the day.

I probably have to ring them back and ask haha

 

[Finn]

That’s very interesting to hear you are splitting abasaglar, I was made to believe that you couldn’t split this as it works for 24 hours.

I had one appointment where I mentioned night time hypos and my endo said we could talk about a twice daily basal at my next appointment if the night time hypos continued.

I was still dealing with the lows and didn't want to wait, so I decided to split the dose (off-label not doctor-prescribed - you're right, Abasaglar is meant to be once a day). My lows were definitely reduced and my evening highs went away.

I told my endo at my next appointment, showed how it was working for me and she said since I was taking such a small dose, it was possible Abasaglar wasn't lasting 24 hours in my system, maybe 18 hours, so splitting the dose overlapped the 18-hour periods and smoothed everything out.

I don't remember exactly how I switched from 1x a day to 2x a day (and how I did it was NOT directed by a doctor, but it worked for me), but I think I did something like this:
Day 1: no morning dose yet, two thirds of my usual evening dose
Day 2: still no morning dose yet, half my usual evening dose
Day 3: split dose half-half morning and evening
Following days: adjust doses +/- 1 unit as needed once patterns emerge

I know I erred on the side of less basal rather than more basal when I made the change - I would rather be high (and correct with bolus at meals) than be low.

I think you've made a good spot here -

I think they suggested for the ‘changeover’ day to do 5 units in the morning and then 11 in the evening but that seems a lot?! Surely if the abasaglar works for 24 hours I then will have 16 units in my body overnight? I also know I can’t just skip the morning dose and inject in the evening as it would mean being without insulin for most of the day.

This does sound like it would be more insulin in your system if you normally dose in the morning. I'd definitely flag this with your team to be sure that's what they meant.

 

[SB2015]

That’s very interesting to hear you are splitting abasaglar, I was made to believe that you couldn’t split this as it works for 24 hours.

I think my period might also be throwing a spanner in the works, but I’ve only had one since starting insulin so unsure about patterns!

About the changing injection to evening, sorry I wasn’t very clear! What I meant was that I’m unsure about how to change it from morning to evening. I think they suggested for the ‘changeover’ day to do 5 units in the morning and then 11 in the evening but that seems a lot?! Surely if the abasaglar works for 24 hours I then will have 16 units in my body overnight? I also know I can’t just skip the morning dose and inject in the evening as it would mean being without insulin for most of the day.

I probably have to ring them back and ask haha

I still remenber the ‘Honeymoon Period’. So incorrectly named As in diabetes terms I found it somewhat chaotic and unpredictable, with my beta cells joining in with out warning. I was in DKA at diagnosis so it may be that I was further down the line, but personally I think having the bolus to match to meals makes life more flexible rather than trying to sort things with basal insulin.

With regard to a split basal this is usually done using Levemir which is designed for this purpose, as it does not last as long as other background insulins so changing morning or evening dose has an impact. Those longer acting ones last for 24 hours or more so changes in morning or evening doses are less effective. I did that switch before going on to a pump and being able to make a change in the morning to match what I would be doing that day was very useful without impacting the night dose.

A half unit pen is also extremely useful especially as you are sensitive to insulin at present. Much better adjusting by half a unit each time than a whole unit. These are usually available, especially if you are using the reusable pens, rather than the disposable ones, which might be restricted to whole unit ones. It may also be that not all insulins are available in half unit pens.

After my diagnosis I did go straight onto Basal/Bolus. It took some time to get the doses for my basal right, but then I was able to eat what I wanted when I wanted so long as I couod work out the insulin to match the carbs I was eating. This was and still is not an exact science as there so many other factors that effect what we need but you quickly become an expert On the carbs that you eat more often. (I can quote the carbs in many common biscuits now!!). I think the current NICE guidelines recommend going straight basal/ Bolus for all those diagnosed with T1 or LADA. Well worth asking

It sounds like you have a good team supporting you who are listening to your concerns. Keep asking questions and let us know how things progress.

 

[Evergreen]

Sorry for the late reply! But thank you for all the experiences and advice.

Still no word on a half unit pen, might need to chase them up. I am however getting on ok with the Abasaglar in the evening. I have to be pretty careful about what I eat to not go too high, so it’s definitely not a long time solution, but this seems to work at least until the team think I could start mealtime insulin.

Hope you are all well!

 

[Inka]

@Evergreen If you’re having to be very careful about what you eat to avoid going too high, then it sounds like you need a bolus/fast/meal insulin. Type 1/LADA shouldn’t be about having to restrict food. You eat normally and then tailor your insulin to your food - not the other way round. Much more flexibility 🙂

 

[Evergreen]

@Evergreen If you’re having to be very careful about what you eat to avoid going too high, then it sounds like you need a bolus/fast/meal insulin. Type 1/LADA shouldn’t be about having to restrict food. You eat normally and then tailor your insulin to your food - not the other way round. Much more flexibility 🙂

Hello! Thank you. Yes I’m aware and it’s something I am working towards with the healthcare team but they feel that currently it would increase my risk of hypos. I have another appointment next month and it’s definitely on my list of things to discuss!

 

[Inka]

Hello! Thank you. Yes I’m aware and it’s something I am working towards with the healthcare team but they feel that currently it would increase my risk of hypos. I have another appointment next month and it’s definitely on my list of things to discuss!

Well, yes - insulin by it’s very nature puts people at risk of hypos. That’s all insulin, including basal insulin. But you reduce that risk by various strategies, including getting the dose as right as possible, eating snacks, having extra carbs, testing, learning from experience, etc.

You’re only in your 30s. My consultant only diagnoses LADA in people over 55. I urge you to question your team more and be pro-active. Don’t be afraid to push if necessary and ask for explanations. Ask them the plan. I’d also personally eat a few normal meals and show them your post-prandial results afterwards.