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Am I imagining this ?

Appreciate big man !
 
Thanks @urbanracer , and well done Mrs Urb !

There's something going on, which we have yet to discover. I don't know yet, but I'm on the trail.

Cheers ....... and glad you're getting lower readings, for whatever reason.
 
Hi @ajbod ,

Have I moved my bed etc. Yes, I've been on a real cleaning routine for 2 years now, but there are still other things I want to do, but can't get the time, because the current routine (plus 'caring' duties) are so full-on.

I've gone through a process of throwing out excess bedding - the less fabric we store, the better, unless we actually need it. So don't want to be keeping 20 bedsheets, when 2 or 3 will do. Towels the same.

Now, I ain't gonna get into a debate with you on this one, coz you're the cleaning Pro , but ........... based on what you're saying about laminate floors, and based on my observations so far on human hairs being closely linked to my nasal rhinitis ('almost' every time I get the nasal rhinitis, I remove it by finding hair on some or other surface), I'm wondering whether the problem is that hairs (particularly an eyelash, or a thin hair from e.g. forearm etc.) could find their way into the floorboard joins - where the boards abut each other, and once a hair gets down there, the vacuum may never ever get that out. Whereas, on a carpet, hairs will mostly sit on the surface, until vacuumed up.

Your task @ajbod , should you decide to accept it , is to design a laminate floor vacuum which runs along the joins, sucking like fury !!!

Fully agree with you that folks should get the carpet cleaned regularly, and you do have to use Hepa filters, and change them.
 
I find high BG can exaggerate all sorts of symptoms including blocked or running nose
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But maybe that fits in with what I'm saying @In Response , maybe your occasional high BGs are from the very sources I'm suggesting, and maybe that's why the bloods are high, and why you're getting the blocked nose !
If your BG is high, a CGM becomes inaccurate
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OK, it was another very bad up and down day today (Monday). Now a few hours ago, I managed to find the 'unknown source', and remove it, so my bloods plummeted down, and I had to get 'carbed up' pretty quickly. Welcome to my life ! At 23:56, it was 17.0, and at 00:25 it was 5.2 on a vertical down. Guess what I'd been doing for that half hour - yup, lint rollering all the areas I'd been in since arriving home, and lint rollering the clothing - that bit not too intensive, the elasticated jacket collar, the elasticated cuffs, the legs of the jeans. But probably more importantly, the carpeted areas I'd been over since getting home, and unpacking groceries. Now, this isn't some game I'm playing. I don't want this nonsense. So, on top of a sudden drop like that in 29 minutes, you want me to add some extra basal into the equation ? And you think that will help the situation ? Sorry, @In Response , I'm being sarcastic, and I shouldn't be. That doesn't help, but do you see what I mean ?

Now, I'm not an expert on all the CGMs and how accurate they are. And yes, I would agree 'in general' about what you're saying - they are more likely to be better around the middle (norm) ranges, not so much the outlying extreme values. But, since the scenario I just mentioned, with the bloods dropping, after that, as per usual, I gradually got nasally blocked again (over the last few hours), so when I read your comment about CGM accuracy, I did an immediate comparison. CGM at 04:09 = 23.6, finger prick blood test 2 minutes later = 23.4. That is no word of a lie, just let me know if you want photographic evidence tomorrow. 23.6 v 23.4 - I can handle that level of inaccuracy.

So now, I have to try and work out where the new 'unknown source' will be, and go do some lint rollering. Plus try to make a sensible assessment about how much bolus to administer before sleep time, and whether or not to allow any carbs. You wanna swap roles anyone ???

Now, the dust mite obsession. Well, yes, I would also describe it as (right now) an obsession. I want these critters driven out of town, and I'll be on the leading stagecoach ! Truth is, as I said way back at the beginning of the thread, I don't know for certain what the source problem is, but I'm getting closer all the time to finding the actual answer - that's why I'm on this journey, certainly not for the fun element. And I was really looking for some of you folks to lend me some brainpower, objective monitoring and nasal awareness, to help me narrow it down a bit quicker, rather than all trying to advise me on the recommended ratio of bolus to basal.

Is it dust mites ? I'm not sure. is it Demodex mites ? Is it mould, fungal, bacterial ? I don't know. But it's somewhere in that mix, I am pretty certain, and it needs narrowing down a little bit more. It is definitely affecting my T1 blood levels, and causing some very erratic diabetes.

If it is mite related, is it hair, skin, sebum, and a whole other range of possible foods ?

I'm not sure it's simply mould, fungal, bacterial on their own, although they could definitely be part of it. Not sure that Eucalyptus or Lavender spraying would resolve them. Maybe Tea Tree oil would. Also, not sure the lint rollering would improve them so quickly.

If it is hair, and hair definitely seems to be in the picture, what is going on ? Is it the sebum attached to the hair, that is attractive ? What I can tell you is that there appears to be different nasal signatures, and I'm still trying to put together the full picture.

I mentioned in an earlier comment about thinking I'd noticed a worsening when I'd done some paper shredding, so I stopped that happening indoors for now, as my bloods are up and down quite enough. But ........ if that's also relevant, and paper is food (to mites), then keeping a paper hanky in a jacket pocket could contribute. I'm saying that because I'd grabbed a Double Cheeseburger when out earlier and had inserted one of the serviettes into my pocket, and later found it ......... and my bloods had been climbing when out. Some wrist hair on the elasticated cuffs, but could the paper serviette have been food too ? This is based on the fact that I've noticed some serious nasal blocking if bringing in garden material / earth on the soles of shoes, and paper is also a natural product.

Now, I don't want to turn any of you up to the level of obsessive observation I'm at, but if I can at least get you thinking and observing that maybe there is something worth watching here, that would get a fresh perspective on it.
 
@JAT1 - that is perfectly sound advice. But truth is, I'm way past that. I have been documenting every item of food eaten for the past 4 or 5 years (really for a different reason though - a separate investigation into certain ingredients we were trying to keep a check on), although I finally stopped recording foods eaten back in Spring this year.

I'm a great believer that we should never assume we are 100% correct on things - we can all overlook things, or not fully understand someone else's perspective. That said though, I have pretty much considered all the possibilities that I can think of .......... including 'basal' (another little bit of basal humour there !) ......... and I am not shutting my mind off from any other possibilities.

You have to understand - I've now been on this trail since March 2016, watching and analysing all the factors.

But for now, I'm still returning to the 2 things where I'm seeing correlations:
1. Nasal rhinitis rises, BGs rise. Nasal rhinitis reduces, BGs fall.
2. Hairs on carpet, or fabrics = removed, nasal rhinitis seems to fall.
I think there's more detail yet to be identified, but that's enough for me to focus on for now.
 
@Jaylee - I want to come back on your post here, but maybe tomorrow if I can.
 
Only time for one tonight ...........

Hi @Jaylee ,

Just had some thoughts last night based on what you'd written, not saying they necessarily apply, but let me throw them out there anyway (in my usual rubbish dump fashion !), and you can pick and choose, or laugh !

Re: your impression of cartridge potency ..........

I don't think it would be this, but I'll include it anyway, if only so you appreciate I'm trying to think of all possibilities ........... years ago, the older insulins I seem to recall, were more temperature sensitive. So is there any possibility, that your lifestyle routines involve 'some' cartridges suffering higher temps for certain durations, and maybe that is having a negative effect after a few days. Although, I wasn't aware that even Novo & Lantus sufferered that too much, being a bit more modern than the insulins I'm thinking off.

Now, if there is any meat to the scenario I'm talking about in the thread, could it be that you have a bad day / bad night (due to my 'unknown source' - and remember, most occasions are associated with nasal rhinitis, but some aren't), and that actually, there's nothing wrong with your cartridge. The only way to test that, would be to leave that cartridge aside for a day or two, and then try it again. Maybe even a 3rd time, just in case the 2nd time is also a bad day ! So maybe there's nothing wrong with the cartridge, maybe it's just a bad day, or bad couple of days.
And if the cartridge does seem OK on 2nd trial, or even 3rd trial (if you can be bothered ! ), then the next question is ........ what's actually causing the bad day ? That's harder work.

Now, what you're describing as the 'stacking effect' - again, could be related to this 'unknown' thing I'm trying to pin down. On the days when you're cruising at 5 with no basal onboard, you're almost non-diabetic ! I know I get weird periods like that, and I've heard others do. Say I was right, and dust mites were involved, well ........ maybe the really bad days are when they're eating (and releasing their enzymes), but maybe there are other times when they're 'stag rutting' , or moving colony, or something which doesn't affect us as badly, so our systems aren't then in auto-immune mode, and no longer need the insulin.

I'll stick my neck out again, and say (and it's going to probably take longer to work this one out), I believe what we call 'sneezing' may actually have some meaning. Maybe it's a signal that they use, either to say - hey folks, large food portion over here, or new colony set up here, or end of colony here - that clown on 2 legs has started again with the Eucalyptus ! I could easily be wrong on the sneezing theory, but I kinda just have a gut feeling about that, and I've been monitoring all of this for quite a while now.

Only thing I can say regarding the insulin potency is, see if there's any other common denominator that happens around that time, and that's hard work, trying to identify the other common factor.

Sorry @Jaylee - I probably haven't helped !
 
Or it could just be where the insuin is kept when out of the fridge.
 
Hi @James472 ,


Appreciate your thoughts on this..

OK, in the early days of this “potency loss.” I stuck with the cartridge, increasing the dose by increments of 2u thinking my requirements had increased..
Then when I changed the cartridge, was “captain hypo” needing very little bolus on the new basal dosage. So I reverted back to my original set Lantus dose & was fine.
I’m mindful of where I keep both pens in use outside the fridge & have no issues with Novorapid.
I’ve tried keeping the Lantus pen in the fridge, taking the sting on injection from cold. Rotating injection sites as always. Using Frio wallets.. All insulin boxes are in a Tupperware container in the fridge, so no chance of touching the sides of the unit.

Not all cartridges do this I can’t even pin it to one batch or box..
I go though a cartridge every 18 days, (including air shot units.) the last one worked all the way. I started a new one 2 days ago..
There is a little play in a cartridge for “sick day rules.”
In the summer, or warmer climates on holiday.. I’m more insulin sensitive & need to ease off my basal dose by a unit or 2? (Especially when grafting in a sweat box or sun trap. ) However, the mysterious potency loss can happen at any time leaving me chasing errant BG readings in the 20s (meter agrees with Libre for me.) with Novorapid & generally “busking” all eyes & teeth through a rough day…

Since the advent & use of the Libre in the last few years. My observations have become clearer regarding explanation with an endo or DSN on the data as opposed to the old meter logs..

But alas, they believe there is “no such animal…”

I’ve been pushing “this” for years.. I might as well shew them pictures of where I work & suggest it’s “Area 51.”
 
@Jaylee , have got some more thoughts, but don't have time to collate till later.

The other thing I meant to include was - does Lantus need to be 'shaken' before use. I didn't think it did (like the old basals), and I don't recall shaking when I was active with it. But I don't think it's that, my thoughts are on other possibilities, but they're all going to be theoretical guesses.

Later.
 
In your own time bud.

No Lantus does not need to be shaken like a “spray can.”

That was the old protaphane… (Actually, it was advised to “roll” the cartridge rather than shake..)
 
To answer your initial question bluntly - yes, I think you are.
This extreme focus on dust mites seems like a big distraction, and getting in the way of you improving your situation.
I do believe allergies could play a moderate role in varying BG levels, but small compared to the basics of appropriate insulin use, diet, bodyweight and exercise, discussion of most of which seem conspicuously absent in this thread.

It sounds to me like the real issue here is serious insulin resistance, the huge doses of bolus, a lack of basal, and I'm guessing diet.
It seems quite predictable that these would lead to rollercoaster BG levels. MDI of fast acting insulin isn't good at maintaining steady levels on its own for T1s. These huge doses probably introduce a lot of variable absorption and injection site issues. Insulin duration is also dose dependent, so the doses are probably stacking in hard to predict ways. It also doesn't seem surprising that there would be occasional brief periods of stability in there when the overlaps just happen to balance right for a little bit - stopped clock twice a day and all that.

What's that saying? - when you hear hoofbeats, think horses, not zebras (or unicorns or galloping dust mites!)
 
Well ............ ouch ! And to answer your post slightly less bluntly ;-)

Bud - the problem is I don't get to hear hoofbeats, my dust mites are wearing Doc M's, so the approach is silent, but it's still a good kicking !

@Westley , this focus on dust mites (and the other possibilities) might be a distraction, because I have admitted from the start that I could be totally wrong, but you can't in fairness say it's getting in the way of me improving my situation. This all started back in March / April 2016, and it happened pretty much overnight (not one day / next day, but probably one month / next month) and I did all the initial investigation of all the things you're suggesting - injection sites, different insulin, diet (I fully examined all diet aspects, and then started down the line of seeing if there was a particular food ingredient involved), and way back then, dust mites hadn't even crossed my mind. I posted a thread on this forum March 2018 trying to figure things out, and folks came forward to try and help, and offer advice.

Now that's 5.5 years ago, and I didn't start considering dust mites etc. etc. until around 2021 (I'm so exhausted with it all, I can't recall precisely when), but most of the time since 5.5 years ago has not been dust mite focussed. And then add on the earlier 2 years where I was trying to figure it out on my own. So I don't think you can say I haven't been considering other stuff !

It sounds to me like the real issue here is serious insulin resistance, the huge doses of bolus, a lack of basal, and I'm guessing diet.
It seems quite predictable that these would lead to rollercoaster BG levels.
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OK, let's go through these:
Insulin resistance - well, as I've said, it switches on and off, and pretty much in correlation with the nasal resistance. And I long ago analysed injection sites, and disproved that. When I got bad days, I noted that it might be a bad site, but eliminated that with random subsequent testing in the same area.
the huge doses of bolus - well, I don't have a choice on that. You can't bring down a BG of 25 with 4 units of bolus. And if you're saying that the huge dose of bolus is causing the see-saw effect, then I have to paint you the full picture. I can put in a large dose, and it's almost non-effective, or just keeps the reading up there (high) where it was. So I have no choice but to bring it down again. And if you think well, that's just asking for trouble, putting in one large dose followed by another large dose (I don't mean only 10 minutes apart - I am experienced and I do know how long to leave it), I can re-assure you that I rarely get hypos.
a lack of basal - I think you know what I'd say on that one !!! Fully understand, but when the so-called insulin resistance disappears during the night, I don't want large basal coming at me. That alone should tell you that I am actually trying to play it safely.
Have to say ......... this was all even tougher without a CGM.
And ........ you also have to remember that I only stopped basal 18 months ago, so from March 2016 till March 2022, I had this weird nonsense, but I was still on basal. So I don't think we can blame that.
and I'm guessing diet - my diet is sometimes good, sometimes bad. But I know how to eat sensibly (and I do), and diet isn't the problem - although diet definitely isn't as good as it should be. I've understood carb ratios since I was young, so I know how much bolus to do for carbs. And food intake in the past has never caused this kind of rollercoasting. This is nothing to do with diet.
Exercise - listen bud, if you have to spend as much madness time lint-rollering and vacuuming as I do, you'll find you're doing pretty OK for exercise !

From the way you've constructed your post @Westley , I don't think I'm going to convince you, and I'm thinking, well, do I even need to bother ?
But you're perfectly allowed to challenge people if you think they're talking nonsense. And the truth is, I don't know the answer yet.

I just think it's worth exploring.

(mod edit to comply with forum rules on language)

@EllieM - wow ! The forum rules on language certainly are v. strict. In this day and age, I'm struggling to see that word as an expletive. Beavers build them, and I only added an 'n' onto the end. But OK, I understand, if this is aimed at all ages - that's me told.
Just not keen on seeing a blank edit like that, where it looks as if I was swearing - I should have left it the way the auto-edit did it - doing pretty **** good for exercise ! Understood, and accepted. Head bowed now.
 
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Jaylee said:
Hi @James472 ,


Appreciate your thoughts on this..
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Hi @Jaylee ,

I'll go through your points again:

1. It is theoretically possible that you 'are' genuinely getting occasional 'duff' cartridges, but I can see why your support teams would find that tough to consider. It wouldn't be the first time things have gone wrong at a source manufacturing site, but it is unlikely, particularly since these guys have got to be very careful when manufacturing something so critical as insulin. So that one unlikely, plus, if it was that, I feel it would be more likely to affect the whole pack of 5, rather than just 1 in the pack.

2. In the same way you are taking fridge conditions & separation into effect, it is possible that there's a slight oversight of that happening in the pharmacy, or the pharmacist's distribution supplier - fridges (even at the professional level) do at some point start to perform less well, and it can sometimes take a little while to realise that some of the storage area is being subject to higher temps. Or, if they're storing the Lantus stock at a worse section of the chiller, then cartridge no.1 of 5, or cartridge 5 of 5 could be warmer. But again, these dudes are in the chilling business, so my money's not on that. Again, didn't really have Lantus down as an insulin that is 'over-sensitive' to temps.

So those two can't be ruled out, but I'd say - less likely.

3. The summer, or warmer climes ? OK, you know where I'm heading now ! I remember noticing this phenomenon over the years (some chance these days !), and others have said this for years. If, as I am theorising, there is another 'thing' going on, then maybe the warmer climate is helping. If it was dust mites in clothing fabric, then the UV from sun will quieten them down after (I think) 20 minutes. There are 2 good plusses to hanging washing out on outside lines - the fresh air blow is good for stuff, plus the UV from sun kills dust mites after 20 minutes. Although, as I theorised before, it feels to me like a dead dust mite only becomes food for the next generation. If it's demodex mite related, again, the sun beating down on you might keep them in order down the hair follicles.

If you do a search on-line for where diabetes is most prevalent, and I looked 2 years back, I seem to recall a large number of areas with particularly high percentages were islands in the pacific (with > 20%) and various other places. There will be a reason for those locations I'm sure, but I don't know what - could be high humidity maybe ? Might be the nutritional diet, I don't know ?

4. If you go through a cartridge every 18 days, are you on similar to what I was used to - i.e. 16 units basal ? If so, that's less than 1 unit per hour ?

So, if you're ending up with a BG of 20, does that mean you've left it to gradually reach 20, or has it happened quicker than that ?

What I'm saying is ......... (my head's starting to hurt now, with the maths) for me, if my Lantus 16 units stopped working, it would take quite a few hours to reach BG of 20 (if I was in normal diabetic mode, which I'm far from right now !). Say I was at BG 6, and stable, no food, no lingering bolus, it would take me 10 hours to hit BG 20.

I realise that doesn't necessarily apply to you @Jaylee

So does it take you 10 hours to hit that BG 20 ?

And, is there any associated nasal rhinitis ?

Or, could it be that it's actually an injection site issue, and more a reflection of the NovoRapid bolus going into a wrong injection site ?

I'm not sure if I've misinterpreted what you've explained there ?

The other things you were talking about in the previous post, the fluctuations, could be affected by ordinary / every day stuff, connected with this 'unknown' thing I'm chasing. For instance, I found on several occasions, that things can improve when you wash the duvet cover - not every time, but on a significant number of times, it has been noticeable. Don't get me started on all that ! If my thoughts on there being some connection to hair are right, the problem with bedding is, a hair or two could easily go unnoticed for a while if it's on the wrong side of the duvet cover, and / or inside the tuck of the pillow case !

See if you can note down anything else that happens when your cartridge potency worsens - change of clothing, change of bedding, garden earth / plant material under soles of shoes, recent haircut, with a lot of cut hair on a scarf or a collar etc. etc. etc. I will try and make a list soon, of all the possibles I'm considering, then you'll know for sure I've flipped.

I've got a bunch of tests I'd like to do, to see if there's any mileage, but while I'm so rollercoaster, there's hardly any point right now - coz I won't know if the test has worked, or if it's just normal rollercoaster. But once things quieten down, one thing I had planned to do was Cherry Tomatoes - on the vine.
I thought on a couple of occasions, I'd linked some very heavy nasal rhinitis with having allowed tiny fragments of the vine leaves / stalk to fall on floor in kitchen, and only noticed it after the rhinitis started. But again, it could have been a misinterpretation, with the cause being other things ? If anyone wants to volunteer for that test, I won't say no ! But if you don't have my population numbers, you may have to allow a few hours !
 
Hi @James472
I have variable insulin resistance, and genuinely feel that after ten years lantus no longer works for me. My team are authorising a pump and I'm going to try it. Given the option I would try an alternate basal first (tresiba or levemir) but that isn't available for me. (And I honestly suspect/hope that the pump will be great for me)

If you are worried about allergies you should be able to get tested quite easily. There are also diabetic complications which I believe can cause resistance issues so I would honestly also talk to your team and see what they suggest. T1 evolves over the years/decades. I understand your hypo fears but really your diabetic team should be able to address them.
Good luck
 
To clarify to the point about dose dependent duration, here's a figure (from here). Bigger doses don't just bring down sugars more, they continue acting for longer.

I believe a similar effect happens to varying degrees with other insulins.

So doses much bigger than typical for most could be causing stacking effects much later than the durations we get told for a given insulin.

I'm not suggesting you use less insulin than it takes to get your BG down, just pointing out that these long tails can sometimes explain variations that don't make sense when going only on the common simplified descriptions of insulin action.

These long tails do get flatter towards the end, so lots of big doses during the day might give a somewhat basal like effect overnight and make it seem like real basal isn't needed, but it's coming at the cost of the rollercoaster during the day.
An actual basal is a more controllable way of achieving this though, and should allow the bolus doses to come down.
 
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In Response said:
@James472 PLEASE SEE A DOCTOR!
YOu seem to be doing all this analysis and hypothesis alone whereas there are professionals who can help you.
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Honestly, it's not as if I'm not seeing a Doctor. But thing is, this current focus has only happened over the last 2 years, or just a bit more. And in the beginning my Doc and the Diab Team, did discuss, and did try to help - e.g. don't be too quick to chase with more bolus, make sure you rotate sites etc. etc. And they even changed me over to another bolus - I think it was FIASP. But it made no difference, and I realised then I felt safer with the insulins I've known and trusted for a while. The Diab team are still offering to get me onto a better basal, so they are there for me if I need.
It has got worse over the 7.5 years, but before anyone says - oh yeah, that's because you're constantly upping the bolus, I have to disagree. Sorry, but knowing what I now know (or think I know), I think it's got worse because the situation has gotten worse. And now, although too slowly, I would say it is very gradually improving.
Folks, you have to remember, it was all pretty normal till March 2016, and then I started to notice the weird BGs. So that's 7.5 years ago. And I'm still here, so I must know how to deal with it, although its a major pain having to handle this all the time.
You really don't need to be worrying for me, if I've handled it for 7.5 years.

@EllieM mentioned changing over to a pump, and I think it was @Antje77 who also talked of that earlier, and I hadn't realised they are now able to communicate with the CGM (and back off), so that could be an option. But I would prefer to be using a pump with more ordinary doses than the amounts I'm taking. I would definitely consider using that option, but right now, I want to pursue what I think I'm noticing.

Seriously, if you don't think I know how to judge bolus and basal decisions, fire some theoretical questions at me, and see what I would advise - e.g. Patient A is taking Bolus X and Basal Y, and getting hypos at certain times etc. etc. And I'll give you the advice I would use for your test patients, and I'll forget the nonsense I'm talking about, and just stick to bolus / basal adjustments.
 
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