Honeymoon period

[Rory Delap's Long Throw]

Hi all,
Wondering if anyone has experience of a honeymoon period that sees a fairly drastic reduction in bolus insulin for meals over a couple of months since diagnosis?
My type and amount of carbs (wholewheat or brown) per meal has remained pretty stable (70 to 80 breakfast, 80 to 90 for lunch and dinner), but while the basal insulin has stayed at 20units every morning this is what my bolus regime has looked like;

First 3 weeks from diagnosis - 10/8/8 (breakfast, lunch, dinner)
Week 4 - 10/6/6 on advice from nurse as had bad hypo out walking
Week 5 and 6 - 10/4/4
Week 7 - current week 10/3/3, but trying 8/2/2 tomorrow

I’m still taking a lot of snacks in between meals to stabilise dips between meals, total carbs for snacks today was 210g (more than lunch and dinner combined).
The frustrating thing is I’m still having the odd crazy dip post meal, e.g. dinner tonight I was at 6.1mmol, took 3 units 15mins before 88g meal, rose to nearly 10 the. crashed to 5mmol 1hr later and had to take 20g of jelly babies just to get it to stabilise around 6.5.
Guess my question is, can the need for bolus insulin drastically fall like this? Basal amount of 20units seems fine, in that my overnight is always around 4.3 to 5.
Any help or wisdom is appreciated!

 

[Wendal]

Morning Rory,
The important thing is to find an insulin regime that works for you and then adjust as necessary especially if you have a pretty consistent meal pattern and daily carb intake.
It does vary so much according to individuals but I have a similar carb intake to you but my insulin regime is quite different.
I have a much lower basal so 6u and a normal bolus regime of 4/6/6 for meals but I arrived at that by starting low so 2u basal and 2u per meal and building up until I settled at current levels.
What surprises me is your basal was started so high at 20u but they must have had their reasons and must admit my levels are pretty stable overnight but usually between 6 and 7 rather than your 4.3 to 5 which is great but a little low for me as it will set my alarm off constantly as I want to be alerted if it gets to low especially overnight.
So it is whatever works best for you but personally prefer a lower basal and then can adjust bolus which are much more flexible depending on what I eat or do.
ATB

 

[Lucyr]

As the drops are between meals have you tested your basal before making these bolus changes?

 

[Rory Delap's Long Throw]

Morning Rory,
The important thing is to find an insulin regime that works for you and then adjust as necessary especially if you have a pretty consistent meal pattern and daily carb intake.
It does vary so much according to individuals but I have a similar carb intake to you but my insulin regime is quite different.
I have a much lower basal so 6u and a normal bolus regime of 4/6/6 for meals but I arrived at that by starting low so 2u basal and 2u per meal and building up until I settled at current levels.
What surprises me is your basal was started so high at 20u but they must have had their reasons and must admit my levels are pretty stable overnight but usually between 6 and 7 rather than your 4.3 to 5 which is great but a little low for me as it will set my alarm off constantly as I want to be alerted if it gets to low especially overnight.
So it is whatever works best for you but personally prefer a lower basal and then can adjust bolus which are much more flexible depending on what I eat or do.
ATB

Thanks for the reply, iirc in hospital they started basal around 16 but decided to raise to 20 a day or two before letting me go. Interestingly my overnight had been steady around 6 the first few weeks, only getting closer to 5 recently, the 4.3 was the lowest average. I'll mention this to my nursing team, perhaps I could lower my basal slightly.

As the drops are between meals have you tested your basal before making these bolus changes?

Thanks Lucyr, I had thought the basal was set by what was happening overnight, and as was ok hadn't considered adjusting. My lows seem to happen anytime pre or post meal, but my timing of bolus means while there is no overlap (usually 4 or 5 hrs apart), there should be some level of insulin working, which made me think it was the bolus rather than basal level that needed lowered.

 

[Proud to be erratic]

Yes, both replies so far are picking up on a potential basal issue. There is a strong feeling amongst the Multiple Daily Insulin (MDI) community here that you need to get the basal right first; otherwise your bolus is chasing BG on an unstable platform - akin to trying to shoot a moving target standing in a bouncy castle.

In principle don't worry or even focus on insulin (particularly bolus) total quantities at this stage. Right now you need whatever doses you need for both bolus and basal. I'm not surprised that you are finding your daily needs are reducing and over a couple or more years things should settle and the rationale for reduced insulin will become clearer. You will more happily and instinctively recognise when today's "daily living" is changing from yesterday and that tomorrow will be entirely different; this will seem hugely frustrating just now. But right now you need to find what works for you to keep in that happier territory of above 5 and below 10 - ie comfortably and safely "in range" without the constant background worry of: what is going on, why can't I get this right 2 days in a row, etc, etc?? You are on a pretty permanent ultra marathon and need to pace yourself as you settle in to different routines for different bits of the marathon terrain.

Your previous posts tell us that you were diagnosed in March this year, you use Lantus and NovoRapid, you have Libre 2 and were diagnosed in A&E after experiencing DKA. So you must feel you've been thrown under a bus, lucky to have not been totally crushed to death and now wanting to pick up your former earlier life - probably trying to ignore this major trauma ever occurred. Meanwhile daily living has to go on, not just back to work, but returning to all those other daily, weekly, monthly things that generally fill our every waking moment AND now getting BG management a bit wrong is potentially terrifying and can just make us feel pretty rotten.

Even after understanding the potential carb content of everything we eat and making the best estimate we possibly can of how much glucose our body is going to make out of that food, we then work out how much insulin we need. Alas, that is only part of the challenge: we each digest and metabolise food a little differently. It can make a great difference in just getting the timing right: prebolus, ie how long between injecting and starting to eat, sometimes post bolus or even split bols. Timings aloe can make a potentially even and flat graph look like a range of mountains.

Everyone's metabolic rate is hugely influenced by any activity and exercise we've already had: 2 days ago, yesterday, today or going to have later today; and we might know some big activity or exercise is going to happen tomorrow. For some of us exercise can need 70-100% or more change of bolus responses; but not everybody - so you need time (weeks or months) to identify YOUR patterns and responses to exercise/activity and how to manage the bolus sizes and timings. It's not just "does a planned 5 mile walk/run/race have a specific outcome?", but also how different is that outcome with different weather conditions? How soon after injecting a bolus (ie having extra insulin on board (iob)) will YOUR) body manage that activity combined with iob? How responsive is YOUR body to activity and YOUR current BG? Some people need to allow over 4 hrs after taking a bolus before getting active others don't need this time buffer; meanwhile it's today and now and that "Activity" just can't be postponed for family, personal or work remits! Decision needed(!) but not enough experience to answer this new question ....! And so many possible variations with the activity/exercise questions, never mind stressful moments or time periods and many, many other things that go on which can affect our BG.

I'm very aware I'm painting a depressing and downbeat picture - which I'm doing to help you understand and manage your own expectations. The truly good news is that even while all these complicating factors are confusing us we learn what is happening, we start to recognise those things we might manage differently and those things that are out of our immediate control and from that learning and experience we naturally start to do better. Someone made the analogy with learning to drive, passing the test and then driving solo. That first time driving unsupervised had its moments. Months later we are happily setting off checking mirrors, negotiating future potential hazards and talking to our passengers about anything except the road conditions: then instantly, probably only very briefly, just making a vital driving decision so, so routinely. That does become the way with managing YOUR BG. The comparison with driving perhaps stops at this stage.

I'm 4+ years into this D malarkey and last week suddenly, unexpectedly, felt so rotten I went to bed mid afternoon and woke the next morning with ridiculously high BG, feeling a bit better but not right and very unsure how best to proceed. From my autopilot situation I knew I was too late to get a GP appointment, I didn't have any clear symptoms that would allow a GP to diagnose anything, A&E was 7 awkward miles away mid city with no parking and my experience has been that not many medical people know enough about me and my unusual T3c to be able to help in what was not really such an Urgent matter. I've been hiking my bolus up (and up) just to regain some control. By Friday I'd not resolved this but felt things were more stable; yesterday mid afternoon I suddenly raced to over 20 and I warned my wife and my adult daughter that I was about to take a further bolus and make a significant 100% overdose! I finally got below 10, with further boluses and minimal food went to bed. During last night my sensor ended early and I awoke to a rising BG (I've been doing fps throughout this period) and now my app had stopped working, demanding to be reinstalled. I would have been flattened if this had occurred in my 1st 2 months of diagnosis - but my painfully learnt D autopilot has turbulently kept me safe(ish) as the Bank Holiday now precludes any possible interim medical advice.

So where does this long-winded ramble leave you? Right now I still suspect your basal: look back at at your last 7 daily graphs and is there a general trend of change in the overnight periods? [NB I was on 2x daily Levermir, now on the fabulously long lasting Tresiba and really only know that your morning Lantus should last you almost a full day]. Normally I would prefer to see a relatively flat and horizontal line from bedtime until waking up. If the trend was dropping (after ignoring any night excursions you can already explain) then I'd conclude basal was too much; if the general trend was rising, I'd conclude basal was too little. Couple of complications with my simple analysis: if you take your Lantus at 7am daily then it might be running out of puff in the small hours and confusing the analysis; also many people experience 2 slightly different uncontrollable automatic glucose releases from your liver known as Dawn Phenomena (DP) typically from 4am onwards or Foot On The Floor (FOTF) starting from when you get out of bed. Early morning high spikes are irregular in frequency or size.

I'm sure if you share 2 or 3 of your recent daily graphs with forum members they will make a stab at interpreting these (as will I) and Lantus users will offer their thoughts on possible better ways of adjusting your basal.

I'll leave you for now and go to try some more bolus "overdosing" if not to control my BG but at least make a better job at managing it today. Still in the low 13s and breakfast yet to be eaten! Did I mention that this D malarkey is not always easy even when you think you know what you are doing and the D autopilot is wobbling?

 

[Wendal]

Thanks Rory just seems a little odd to me that they set it so high and/or no adjustment when you got discharged into community.
The point of a basal is to cover those times you do not have bolus so middle of night as it is a background insulin.
Imo it is the bedrock of an insulin regime so get that right first by doing a basal test and then work on other bits like bolus adjustments etc
Normally to start managing an insulin regime you start low and build up in terms of fine tuning unless there is some other reason for starting higher.
Having a high basal will usually lead to lows as the carb levels simply won’t match it at certain times of the day and it is easier to adjust bolus by diet/ insulin management/ exercise during the day when you are up and about.
However your BG levels seem very good imo if a little low at night but if you are getting a very steady pattern then that is what you are trying to achieve but as I said I would prefer more margin of error whilst asleep.

 

[Proud to be erratic]

Just reading your replies from while I was tapping away, I think its even more important that we see some daily graphs and make sure that we understand the magnitude ( or perhaps no magnitude) of what you are experiencing.

 

[Lucyr]

Just reading your replies from while I was tapping away, I think its even more important that we see some daily graphs and make sure that we understand the magnitude ( or perhaps no magnitude) of what you are experiencing.

I don’t think it’s important for us to see that since we can’t advise on doses but it’s important for the OP to get advise from their medical team if they’re not confident adjusting themselves, as hypos happening pre meal are unlikely to be due to bolus.

 

[Proud to be erratic]

I don’t think it’s important for us to see that since we can’t advise on doses but it’s important for the OP to get advise from their medical team if they’re not confident adjusting themselves, as hypos happening pre meal are unlikely to be due to bolus.

Well, @Lucyr, I do think it is important.

I don't want to advise on doses or in any way try to interfere with @Rory Delap's Long Throw medical team's advice. However a question has been asked and I now realise that I need to see the bigger picture and put that question into context. If he is content to share that data I will be better informed and possibly able to comment further; if he'd prefer to not share is his call. A wider overview can now only help me with any interpretation I might make of the question and my further response.

 

[Lucyr]

Well, @Lucyr, I do think it is important.

I don't want to advise on doses or in any way try to interfere with @Rory Delap's Long Throw medical team's advice. However a question has been asked and I now realise that I need to see the bigger picture and put that question into context. If he is content to share that data I will be better informed and possibly able to comment further; if he'd prefer to not share is his call. A wider overview can now only help me with any interpretation I might make of the question and my further response.

“you need to check your basal and get advise from your medical team” is as much as we’re allowed to say though. So even if after seeing photos of daily bgs you know exactly what changes should be made, you aren’t allowed to say what they are anyway, so there’s not really any more useful advice you’d be allowed to say after seeing photos anyway.

 

[Proud to be erratic]

I still simply don't agree with your interpretation. A picture is worth a thousand words. I've read the words and would see the question better with a picture. Without that picture I don't know that there is something more to say, whatever that might be. Please step back a little and find a way to respect my position; your ability to see everything as black and white is fine - if everything is black and white. It's not so clear cut to me.

 

[Rory Delap's Long Throw]

Thanks everyone for the replies, just re: changing insulin, don't worry I'll have a call with the nurse on Tuesday and have a follow up clinic app in a couple of weeks to review. I'm finding the conversation on basal interesting, in that it is not something I have considered or thought about much so far. For context, in hospital my daily insulin injections started at 14 units basal, before increasing to 20 over a few days - after this the overnight came down from about 13mmol to about 7mmol. 6-8 weeks later same 20units but overnight is about 4.5mmol so seems to have gradually fallen a bit.

Here's a snapshot from 2nd April while on the post hospital discharge 10/8/8 dose for bolus;

A 15min walk after lunch led to a sharp dip and strong hypo, so nurse advised reduction to 10/6/6.

This is yesterday, 4th May running with 10/3/3. I'd reduced from 10/6/6 to 10/4/4 on 18th April for the same reasoning as before;

That 4am 3.8mmol was a compression low, but you can see that overnight I'm usually 4.5mmol ish. Main issue here is the sharp dips after meals. Dinner is probably the stand out time here - for an hour post meal BG was steady, rising to about 10mmol, but suddenly dipped within 30mins to about 5mmol doing the washing up (app reported 3.6 but did a finger test) - I took 4 jelly babies about half way into this episode to offset, before BG stabilised.
This scenario has repeated itself from time to time, but the main difficulty I have is;
Light exercise like walking sharply dipping BG levels
Having to eat and drink a large amount of sugar to quickly offset these dips.
Interestingly I've been able to do some indoor cycling for an hour, pre-snacking and taking some jelly babies half way through, with no issue at all. Today I'm trying 10/2/2 for bolus to see how it goes...

 

[Lucyr]

your ability to see everything as black and white is fine - if everything is black and white. It's not so clear cut to me.

It is pretty black and white…. Either it’s the basal causing the hypos or the bolus. Do a basal test to find out which then adjust the dose of whichever is causing the problems.

 

[Inka]

I’d suspect too much basal too @Rory Delap's Long Throw Personally I wouldn’t want to be quite so ‘close to the line’ at night, especially not on injections.

 

[Rory Delap's Long Throw]

Just a quick update, spoke with the nurse team and trying a reduced basal from 20 to 18 to see how that goes. Thanks all for the discussion around this as it helped prepare what I needed to cover with the nurse. 🙂

 

[Proud to be erratic]

Thanks everyone for the replies, just re: changing insulin, don't worry I'll have a call with the nurse on Tuesday and have a follow up clinic app in a couple of weeks to review. I'm finding the conversation on basal interesting, in that it is not something I have considered or thought about much so far.

Sorry Rory, I started a reply to this and then unfortunately mid Sun afternoon I got a fairly unexpected fast curved ball in the form of a brief, repeat, TIA. So most of what I was doing on Sunday got disrupted trying to get a referral to the Acute Stroke Unit which dealt with my earlier one in March - without spending a few hours uncomfortably in A&E. I eventually got an appointment in a clinic that A&E would have sent me to anyway, and that's the only way I can get referred to ACU; I'm now waiting for a call from them.

I would have told you: thanks for your extra info and the graphs confirmed a few things to my layman's mind.

A small decrease of basal seems a good start - principally to lift you through the nightime fasting hours well above and close to or above 6.

Your basal can only cover part of a 24 hr day as an "ideal" background insulin, because your background needs vary a great deal in any 24 hr period. If you do 3 x basal tests across 3 consecutive 8 hr fasting periods you will find 3 different needs and from that selecting an optimum basal dose for lantus that roughly lasts almost 24 hrs becomes a compromise which probably wouldn't satisfy any 8 hr period! So your natural fasting period is during the night and your 2 graphs show an excellent steady basal cover; with just the 4 May being a bit low for my preference.

I was really impressed with how good your general BG management is! Would that my graphs are as good. Also very well done for diligently adding in the insulin and meals details. A great deal can be deduced from those graphs, alone.

Where you have unwanted lows or hypos the simple (trite almost) reason is that you have too much insulin on board. But why? I think a tweak reduction of your basal will help. Bolus timings may also be a factor and then, as you ate already finding exercise is a big factor.

Gauging bolus in relation to exercise and activity is a trial and learning process. My Endocrinologist is a co-author on a paper about D and exercise; he told me that 70% adjustment could be very normal for me and that shouldn't surprise me. What I failed to ask him was that "me, as a 70+ yr old with hugely irregular exercise patterns" or "me, regularly exercising and constantly pushing my fitness boundaries"! I must remember to return to that topic. But only you can do the "trial and learning" stuff.

I noted you have quite a few snacks between meals. Nothing wrong with that. Some on 4 May were in response to hypos, rightly so. Some didn't seem that way - but perhaps I should have looked with a bigger magnifying glass. In general I used to snack a lot, not so more recently. I have no qualms about taking a small extra bolus if I'm highish but fancy a treat.

Do you have half-unit pens for your NovoRapid? If not you should enquire into this. Your bolus doses are small and half-unit doses are excellent for tightening BG management. This capability only comes with reusable pens, which are cost effective, heavier and sturdier so nicer to use and a great deal better for the environment (less waste). Also lighter when travelling overseas and occupy much less space in your fridge or luggage. If you have reusable pens you MUST get 2; failures are rare, but damage can happen and a broken pen is a minor crisis. I don't believe these exist with lantus.

Just a quick update, spoke with the nurse team and trying a reduced basal from 20 to 18 to see how that goes. Thanks all for the discussion around this as it helped prepare what I needed to cover with the nurse. 🙂

Great.

While replying just had a phone consult with the Stroke consultant I first saw who has (happily for me) rediagnosed Sunday's TIA as a non-TIA, but an echo from the March event. My symptoms matched March's events, precisely and this is more than rare; just validates the echo definition.This is doubly great since I don't need any more aspirin or blood thinners (plays havoc with finding MDI sites) and I don't have to stop driving for 4 weeks to meet DVLA criteria.

 

[Rory Delap's Long Throw]

Thank you @Proud to be erratic - firstly I am glad to hear the event you had was a non-TIA.
I am eager to cut down on the snacking as it has been to really combat that 5.5mmol or below and dipping between meals, or in response to a bit of movement/activity. Keen to see if the reduction helps, but yep the sugar intake is far far more than I'd ever have consumed in the past.
The reusable pens I have seen before online, and would be keen to use them to cut down on wastage - I wasn't aware they could administer half units, which would be very useful for me, especially during this period of insulin sensitivity. I will speak to the team during the review coming up, and see if I can change my prescription - and thanks for the heads up on needing 2, a good idea.

 

[Proud to be erratic]

Thank you @Proud to be erratic - firstly I am glad to hear the event you had was a non-TIA.
I am eager to cut down on the snacking as it has been to really combat that 5.5mmol or below and dipping between meals, or in response to a bit of movement/activity. Keen to see if the reduction helps, but yep the sugar intake is far far more than I'd ever have consumed in the past.
The reusable pens I have seen before online, and would be keen to use them to cut down on wastage - I wasn't aware they could administer half units, which would be very useful for me, especially during this period of insulin sensitivity. I will speak to the team during the review coming up, and see if I can change my prescription - and thanks for the heads up on needing 2, a good idea.

Thanks, my planned trip away during the rail strikes was looking very vulnerable.

Refillable pens are also useful because they have a basic dose memory function in the end cap, which is terrific for those moments when you ask yourself "did I ... or?".

If you should change in the future from Lantus to a new (different) basal, then NovoRapid make their refillable pens in 2 colours. This needs a different prescription code for a different colour which is almost essential to prevent administering basal instead of bolus or vice versa!

About snacking, have a look at the BG management process called "sugar surfing". This is small frequent meals with just enough extra bolus insulin to keep you mid range when exercise is not enough. It's quite a "needy" process at first but as your confidence and familiarity increases that becomes more routine and automatic. It might interest you. I did it for a while, then 4 hospitalizations in 2022 needed me to work within the Hospital routines!

 

[Lucyr]

Refillable pens are also useful because they have a basic dose memory function in the end cap, which is terrific for those moments when you ask yourself "did I ... or?".

The reusable pen for Lantus unfortunately doesn’t have this feature (just the novo nordisk pens do), but the Lantus is at least also available in half units. Sanofi JuniorStar is my preferred pen for Sanofi insulins, half units and max dose 30u. There is a whole unit pen for Lantus but I find it harder to get on with, so I use disposable pens for basal and reusable half unit pens for bolus.

 

[Rory Delap's Long Throw]

A bit of an update after my review a couple of weeks ago, now running with a basal of 9 and just 3 bolus in the morning for breakfast, nothing for lunch or dinner. It's been a relief not having sudden hypos and I've been able to reduce my low alarm from 5.5mmol to 5mmol just due to the fact I now have plenty of time to react to it / there are no longer sudden dips and most importantly not taking sugar snacks/juice between meals.

If I'm being very critical if I had known more about the honeymoon period during the first few weeks and had the confidence to reduce my own insulin it would have avoided a few very uncomfortable hypos. I really got the message on discharge that the set dosages for basal and bolus you stick to, and even after contacting the nursing team a couple of times it was reducing the bolus only, not basal as well.

I would really advise new type 1s to be really alert for this honeymoon period as it can cause a lot of stress!