interesting bit from clinic

[Patricia]

Hello all

Thursday my son had his second visit to clinic since going on the pump. Very good overall, despite us feeling things were wildly out of control: 6.8% hba1c, which is the same as last time, and with which we are all, him especially, delighted with.

We HAVE though been having real trouble with unpredictable swings over the last 3 weeks -- high stress! -- with numbers being all over the place and not at all what we expect in situations, etc...

One thing was noticed at clinic that I thought might be helpful to others, certainly was to us:

My son's weight has gone up (yay!), but his overall daily insulin dose has gone significantly DOWN. This seems strange, as he is growing...but the consultant echoed what we heard very early on from a huge expert in the US: that high bgl may be sort of toxic to the system, and that it takes a sustained larger amount of insulin to settle things -- literally over several months. Once things have settled, and the body begins to process things a bit more normally, there is a theory that the pancreas kicks in a little again, but crucially, in *an unpredictable way*, much like honeymoon, or a milder version of what Adrienne's little J was born with.

This is a theory, but one that well-established people have observed anecdotally. The knock-on effects for us have been three-fold:

1) not to think that the lower insulin needs are indicative of anything being *wrong*

2) to take OVERALL DAILY DOSE into consideration when looking at the *whole picture* and trying to figure out what to do next. We rarely do this, and clearly would benefit from doing so more often.

3) most importantly and pragmatically: the overall reduction in daily dose in relation to this weight gain has changed the proportion of things, such that his CORRECTION FACTORS in the day and the night are different from what they were a couple of months ago. This is *crucial* information. We had suspected it and were already under-dosing the correction factor just out of instinct, but the doctor confirmed that the change would have had this effect. It makes complete sense that having the correction factors wrong would have meant more 'swings', of course. So his correction factors have gone from 1unit:3mmols in the day to 1:5, and at night from 1unit:4mmols to 1:6. Quite significant!

***

I just thought this might be interesting esp for the more newly diagnosed among us...I am reminded that both Northerner and Rossi (I think?) have seen their levels go down rather unexpectedly, maybe others?

Best!

xxoo

 

[Sugarbum]

Thats interesting Patricia, especially I think there are more new(-ish!) diagnosed people on here....its good that your consultant takes the time to explain these things.

If only the general population could understand the changes we constantly go through with this disease. Although, on most occassions I can barely understand them myself let alone explain them to others 😉

Also I am duely impressed that is the second time you have seen the pump consultant since getting the pump (I think it was just "weeks" you started before me?) and I am going for the first time on monday to actually see the pump consultant, I didnt even see one before which I thought I would to get approval.

Did your son appear to understand all of this?

 

[Patricia]

Hey Lou...Guess only you and I think this is interesting! 🙄

However, yeah... E is um, a VERY bright boy, who seems to tune in like a lighthouse turning its light to a boat...He's cool, and hip and all that stuff, but when it comes esp to his diabetes, he only has to hear something once and it's in. It was one of the things about this all which kind of broke my heart early on: in hospital, he was just so *switched on*, so *wired* to all this information...He retained it immediately, knowing I guess that it was the most important stuff he could know in his life...He had to get so serious so quickly.

So every step of the way he seems to be able to just absorb and understand all this. He doesn't make the decisions to do with pump settings etc, and he doesn't actually register worry particularly when he has a lot of hypos or something, though he finds them exhausting. He worries more when his numbers are consistently out of range. So we take off him what we can, though I have the feeling he would do okay if left to his own devices.

Anyway, we *do* have a good team for our pump clinic, one of the best in the country I gather. We are traipsing out again to get the sensor read out in a week, for instance, and have also scheduled the annual review there in Jan.

BTW, numbers seem to be much more understandable, a little high though, with the change in correction factor. It's staggering the effect of an inaccurate factor, I think...We're relieved though that again decent numbers feel in reach. Phew.

xxoo

 

[sofaraway]

Hi Patricia, I found that interesting too and relates to my expereince. When my A1c was high and blood sugars terrible I started on insulin and after a few weeks was taking 40-45 units of insulin per day, after about a year I had my A1c down to below 6 and was taking less than half that insulin. over 3 years on I take 20-25 units per day and am insulin sensitive. My experience has been fairly consistent own insulin production,rather than unpredictable, but I know that I have always had residual insulin production.

I hope that the adjusted ratios are better for his blood sugars and prevent some of those lows. I

 

[rossi_mac]

Hi Patricia,

Interesting stuff indeed.

It does feel good to hear you say "not to think that the lower insulin needs are indicative of anything being *wrong*" and when I spoke to my nursey about it she kinda siad it might be strange but not unheard of.

I've never looked into total daily doses, but will consider it now cheers🙂

Correction doses I always under estimate but I am trying harder to sort out some ratios, hope you succeed too!

Glad to hear you have such a good team and hope the wild swings get under control soon

Lou hope your pump team help you out too on Monday

Cheers

Rossi🙂

 

[Northerner]

Hi Patricia, just seen this! Yes, that sounds perfectly logical to me. I am 3 st heavier than this time last year and my insulin requirements have dropped 50% or more some days from back then. I told my consultant this in October but he offered no semblance of an explanation. Of course, it may work slightly differently for an older person like myself as the type 1 is often slow onset.

Looks like you've got a consultant who actually takes an interest in his patients!

 

[Admin]

Hi there - insulin usage does drop on the pump -by up to 25% - I am still settling in on mine and had to up mine from what they first started me on which was a reduction of 25% - but they say that is probably because I had fairly good control to begin with. My levels are so random sometimes - at least I can react to them quicker on the pump!

 

[Patricia]

Hi all

I'm interested to hear that our experience has some echoes with others'! It does make sense, but clearly isn't spoken about much, or proven in any clear way. We took it seriously though because we first heard about this phenonmenon from a ped diabetologist who used to head up the American Diabetes Association...A strange 'friend of a friend of a friend' kind of connection, conversation held while she was rushing to work, obviously using headphones, at 7am in the morning her time...All a bit wild, but having this conversation within 2 weeks of E's diagnosis completely focused us on the pump and the sheer urgency of getting it (thereby control) and preserving whatever function may be there...

We held onto her thoughts and kept our fingers crossed, so it was interesting to see so starkly at clinic that his weight had gone up yet his needs down -- (much more than the 25% down from going on the pump, which was absolutely the same with us Admin) -- and even more interesting to hear the consultant here theorise the same thing, anecdotally speaking.

We are incredibly lucky to have our team. Our local one is difficult though well meaning. It's our pump one we depend on, and who take a real interest in the life of our boy. We talk medicine, but we also talk well being etc...They keep a good eye on him.

Wish I'd applied this whole thing to your situation Northerner, and yours Rossi, back when your daily doses were going down! Sorry, realise now it would have perhaps helped...Didn't click.

xxoo