Insulin resistance - what to do

[DeusXM]

Hello, it's been a while....

...so, I'm having some problems.

For the last couple of years, my A1cs have been great. Like, 6.2-6.5 great. But after falling through a hole in the NHS for the past four years, finally, I saw a consultant.

Who freaked out at the prospect of me having a couple of hypos a week and basically told me that having a nighttime hypo is going to give me an actual heart attack.

So, she started getting massively worked up over my insulin doses...which are high, and here's the issue.

I'm currently on Tresiba, and until last week, Fiasp.

The Tresiba is weird. Basically, regardless of if I take 35u, or 15u, the result is basically the same. Some nights, my BG is as level as Norfolk, or, it just climbs up constantly overnight. Seriously. The amount of Tresiba I take has no relationship whatsoever to my blood sugar level.

Then, I was on Fiasp. I switched about five years ago because 'it's faster'.

It isn't.

I've got in a pattern now where if I see my BG at 7 and creeping up, I know I'll need to correct because in 40 minutes time, it will be over 10. But here's the thing. Fiasp just doesn't seem to work. I need to take a bare minimum of 10 units for it to even register, and it doesn't seem to start working for at least 2 hours - and then it punches, hard and keeps punching for about six hours after. Honestly, its action profile is for me, more like Insulatard (yep, that's how long I've been doing this...). So, I switched back to Novorapid because after reading up, I saw other people reporting that Fiasp seems to either take forever, need big doses or just 'go off' very quick.

I'm now really starting to despair. Neither Fiasp nor Novorapid seem to do anything at all for at least an hour. My correction doses need to be a minimum of 10u and I can inject 15-20u of either Fiasp or Novorapid at 8mmol/l into my actual vein with a 12.7mm needle and 90 minutes later, I will still be at 14mmol/l. Worse, my insulin ratios are something like 1:2 - as in if I eat a regular, two-slice of bread sandwich for lunch, I will need 20-30u of bolus.

I've been doing this for 26 years and this is the first time I really feel like things are coming unstuck. I've tried fresh cartridges. I've changed needle lengths. I've changed sites. I've changed insulin. I've basically stopped eating carbs entirely. I'm literally mainlining insulin and nothing happens for two hours - and then I pay the price with crash.

Basically, I'm stuck in a cycle of rage bolusing with rapid insulins which aren't rapid, and basal insulins that just don't seem to follow normal rules.

Any tips for breaking the cycle?

 

[Inka]

If it were me @DeusXM I’d swap to different insulins. I’d change the bolus insulin first, so would try Humalog or Apidra. Both of those work normally with high sugar whereas Fiasp is renowned not to. Id then look at changing my basal.

Interestingly, I posted a thread about improving insulin sensitivity through diet the other day. Again, if I were you, I’d try it for a few months and see if it worked. It should because it’s known to help insulin resistance.

Here’s the thread:

https://forum.diabetes.org.uk/boards/threads/study-diet-causes-lower-insulin-needs-in-type-1.112061/

I don’t have IR but I eat the diet and it improved my sensitivity even more.

 

[DeusXM]

Thanks Inka. I'm glad the diet worked for you. I am biased as I don't think such a diet will be viable for me personally for maintaining my mental health, and I'd also caution against reading too much into the study given the very small sample size and the organisation that funded it. But as I said, I'm glad it works for you, and hopefully other people can also benefit from it.

You're bang on the money about Fiasp just failing at higher BG levels. The moment I go into double figures, it really is game over at that point. It's awful having a BG at 10 with a Libre diagonal up arrow, taking 15u of Fiasp, and an hour later you're at 15 with a vertical arrow. It feels like driving a car where the brakes just don't work, you're stamping and stamping on the pedal, pulling up the handbrake and then finally, when it's all far too late, there's an initial levelling off and then you suddenly go flying through the windscreen.

 

[Inka]

I came across previous information about the benefits of a low fat plant-based diet when I had great results from trying it myself. I tried it for general health reasons but found to my surprise that my insulin sensitivity improved. I then googled, found other Type 1s (and Type 2s) saying the same thing, and looked into it more @DeusXM I now eat a mainly plant-based diet but do have some veggie meals and some fish occasionally. I find it easy to sustain because of that - and because it makes me feel a lot better. The main benefit for me is extra energy, I’d say. You might also know that Mastering Diabetes uses a plant-based diet. One of the guys there eats 600g plus of carbs a day and takes around 26 units of insulin - total daily dose.

Are you on Metformin? Can you swap the Fiasp?

 

[Thebearcametoo]

Are you a candidate for a pump?

 

[rebrascora]

Can I ask how low your hypos were that you consultant got so aggitated about them and had you double checked the nocturnal ones with a finger prick and did the consultant confirm that before being so dramatic about the possible consequences? The reason I ask is that I average one hypo a day/night and am particularly prone to nocturnal hypos, even with no evening Levemir dose. My hypos are almost always above 3 and I am very confident in dealing with them and my consultant is OK with this. It is not uncommon for non diabetic people to naturally drop below 4 during the night, so I am wondering if your consultant is over reacting somewhat.... Fair enough if they were really bad hypos.

As regards Fiasp, I experience the same with it when my levels get above 10. It is like injecting water. I am pretty proactive about keeping it below 10 as a result and my high alarm is set at 9.2 and I inject 2 units when the alarm goes off and if half an hour later it is still creeping upwards I will hit it with another 1.5 or 2 units. I know that stacking corrections is frowned upon but this is the only way I can make Fiasp work for me. I keep a close eye on my levels when I have stacked corrections and if it continues to rise I will give it another small correction within an hour. I find small stacked corrections work better than one large on both in terms of effectiveness but also not causing such a crash when it does kick in.

Personally it sounds like your basal may be the insulin to look at first if you can vary it so much with minimal change. Have you actually done a basal test and skipped meals during the day to see if it is holding you steady in the absence of food and Fiasp. I find that I need masses more bolus insulin if my basal is not right.... ie I might need 10 or more units of Fiasp over a 12 hour period to correct a 2 unit deficiency in my Levemir dose. I absolutely love my Levemir. The great thing about it is that you can adjust it day to night and day to day, whereas other basals need 3 days for any changes to have full effect, particularly Tresiba. If you have a very routine lifestyle Tresiba can be great for some people, but for me I need to be able to adjust my basal insulin on a near daily basis to cope with my differing activity levels/exercise and stress/mental health etc. My daytime dose is reasonably stable and I can go months on 22 units, but my night time levels are very susceptible to dropping low after exercise and I adjust anywhere from 0-5 units depending upon what I have done during the day. Being able to make that adjustment is essential for me and learning to adjust it and having the confidence to do so was a huge turning point in my diabetes management.

Anyway, I hope some of my experience is helpful to you both with Fiasp and Levemir. I can't say I really like Fiasp, like I love Levemir but it is a better option than NR for me, but I do need to be heavier handed with it to get the results I want.... thankfully not to the level you are seeing.... Have you been using Fiasp long and when did these problems start occuring with needing really large doses/corrections?.... just wondering if I might have this to come to. I have only been on it 3 years and once I got to grips with stacking corrections to make it work, it has mostly been relatively predictable, because I understand it's quirks and have found work arounds.

 

[Inka]

Perhaps it was due to the risk of disturbance to the electrical circuits of the heart @rebrascora ? I was told hypos can cause heart issues. I think @everydayupsanddowns might have mentioned it too (apologies if not - someone here did). I think it was supposed to be a cause in the horribly named Dead in Bed syndrome.

I just had a quick Google and found this:

Diabetes and Arrhythmias: Pathophysiology, Mechanisms and Therapeutic Outcomes

The prevalence of diabetes is rapidly increasing and closely associated with cardiovascular morbidity and mortality. While the major cardiovascular complication associated with diabetes is coronary artery disease, it is becoming increasingly apparent ...

www.ncbi.nlm.nih.gov

“There is increasing evidence that hypoglycemic states may contribute to atrial fibrillation. Several reports of hypoglycemic triggered atrial fibrillations have been reported clinically”

 

[rebrascora]

There is increasing evidence that hypoglycemic states may contribute to atrial fibrillation. Several reports of hypoglycemic triggered atrial fibrillations have been reported clinically”

Yes, I appreciate that, but firstly..... were these really hypos, ie below 3.5 rather than just below 4, and also not just potentially "compression lows" and did the consultant clarify that before making such an extreme and potentially frightening statement.

@DeusXM Have you tried exercise for improving your response to insulin. I sometimes find that a 2 unit correction followed by running up and down stairs 10 or 20 times can really help and only takes 5-10 mins.

 

[Proud to be erratic]

Hello @DeusXM,

I am far less experienced at this D malarkey than @Inka or @rebrascora. I agree with the latter's comment that it's worth doing a basal test, but I think there can frequently be misunderstanding about why this is different for Tresiba and in practice thsi is the simplest D management task of all. Tresiba needs a truly different mindset and once that is recognised it can be a great basal.

Tresiba's profile is to last up to 40 hrs hrs with a steady build up over 6 hrs then a very level release for the next +/-30 hrs. This means today's Tresiba dose is topping up yesterday's dose; this has been one of the marketing strengths of Tresiba, because your once daily dose is very tolerant of timing and in countries such as USA where some people are constantly flying and changing time zones Tresiba doesn't care!

Because no background insulin need is at alll even across a 24 hr period (unless someone is very immobile) there can be no once daily basal that can actually meet someone's 24 hr requirement. So many people using Tresiba optimise their daily dose to keep them safe and level through the night, which is normally the longest fasting period of any one day. Once that optimum basal dose is established it really doesn't need much tinkering with month on month. I find as the warmer weather emerges from spring I need to reduce my Tresiba from 8.5 to 8 units. And reverse that in the autumn.

So the basal test is nothing more than scrutinising your CGM graph from the previous night and if that night was an inactive fasting period and the graph confirms you are even through the night - then your Tresiba basal is correct. If the start point is too high then correction is needed and if too low both at start and finish then an appropriate snack is needed of course. I always do this process over a few nights, to confirm the trend. But a small series of level graphs is all that I need to tell me my Tresiba is doing the best I can expect.

[NB: Some people talk about splitting their Tresiba into 2 half doses, am and pm. No point. Some people suggest a bigger part am and smaller part pm - again no point and risking undermining the way Tresiba should work. Some people don't like, indeed strongly contest such rigidity of any basal: that is their prerogative and I can see such an argument for ladies still also managing their monthly cycle. But Tresiba was brought to market because of its stability - then, alas, its highly useful properties don't seem to be explained by DSNs.]

Now, the remit to manage your BG for the other 16 hrs lies with you, your meals, your boluses and your activity/exercise. Whatever your Tresiba is bringing to your daytime party is whatever it is bringing and any sense of wanting to adjust your Tresiba to somehow influence daytime BG management should be resisted. You are on a basal that is deliberately engineered to provide a stable and even release and changing Tresiba can take up to 3 days to see the outcome. This is the nature of Tresiba: on the one hand it can be stable and dependable (and give you assurance during each fasting night) on the other hand it can be construed as inflexible and therefore unhelpful.

There are exceptions: for example over the last 10 days I have had a background infection - no idea what or why and very few outward symptoms; in fact the only real symptom has been a seriously high (for me) BG that has needed almost double my normal boluses for both food and correction. My TIR has dropped from over 75% to under 30 % over this period. But coincidentally (and fortunately) a recent (false) TIA scare resulted in my promptly getting a slot at a 24 hr clinic; there as part of a very thorough check-up, a high sensitivity C-reactive protein (hs-CRP) blood test gave a score of 22 for these proteins, whereas 10 would be normal; an elevated score but not dangerously so. The neuro Consultant was very clear 36 hrs later in confirming that I had NOT had a TIA, but whatever was going on in my body to cause the elevated C-proteins was also causing my elevated BG and for him not so unusually this was causing the "echo" of my previous TIA from 6 weeks ago. Understanding this explanation (I was fundamentally managing a hidden illness) I subsequently increased my Tresiba from my summer 8 to 10 and that is now making a difference. I will check my overnight graphs to tell me when I can reduce my Tresiba again.

Once you are confident your basal is correct, only then can you review and scrutinise your bolus regime: from checking injection sites, insulin to carb doses and correction ratios. I know nothing about fiasp. But I do know if you made dramatic changes to your Tresiba and didn't wait 72 hrs before assessing the outcome of that basal change, you will probably have just introduced extra confusion, with stress to yourself and possible further elevation of your BGs.

All that said if you can't get a series of usable fasting graphs from your Tresiba AND you are doing little to disrupt the basic fasting test then I (as a non-medical individual) would go back to an Endocrinologist and press them to thoroughly check you over. I learnt so much last Sunday night at the clinic, then Tuesday from the Acute Stroke Unit Consultant about how we sometimes need to resist presuming the Diabetes is adrift and therefore we aren't doing a great job in managing it - but rather if your body is fighting an illness the consequent elevated BGs are a great red flag to get other things looked at. Until Sunday night I had no idea that an "hs-CRP" test existed never mind how quick it could be or how it provided a trustworthy marker that something else was wrong.

I also know, after 4 hospitalisations in 2022, it is extremely difficult to remain calm, collected and rational in working out what is going on.

 

[everydayupsanddowns]

Nice to see you posting again @DeusXM

Though sorry to hear you’ve been brought back by your diabetes misbehaving.

Yes @Inka it was me that mentioned hypoglycaemia as a risk factor for cardiac arrythmia. I’d heard it presented at a diabetes conference, and my consultant was also aware of the issue, and warned me about it - so I think while it is fairly rare, it’s also quite well established?

I found Fiasp worked OK for about a month and a half, then stopped working more rapidly than NR, then I had to start increasing doses (I’d read others had experienced that, so wasn’t surprised), then it started working/not working in a fairly sporadic and unreliable way with even bigger doses, by which time I only had a part of a vial left so swapped back to NotVeryRapid.

Pumper Sue gets much better results by doing a pump cartridge / site change every 2 days, but that’s no good if you are still on pens.

Those doses do seem unusually high, and your correction approach is pretty scary.

Sounds like other insulins are certainly worth a shot. Slower ones, older ones, and non-analogues too. Maybe even porcine insulin.

Are you still eating pretty low carb? Could that be contributing?

Any low carb T1 groups you can scour for others who have faced the same? (‘type one grit’ used to be a thing).

 

[DeusXM]

Thanks everyone. Yep, it was the cardiac arrhythmia point that the consultant raised, which was news to me and also a bit of a shock given family history, my own age and demographic, and the fact that I ended up in A&E 2 years ago with severe chest pain (full ambulance/paramedic job). At the time this was unhelpfully explained away as idiopathic (ie. no troponin, no anomalies found in an angiogram) and possibly a panic attack...which as you can probably understand is and isn't exactly reassuring.

She also mention a couple of other bolus insulins which I'd never heard of before and told me that Fiasp was now 'quite old'. It was the combination of all this, plus the issues I'm having, that made me think that maybe I should get back into the forums again as I realised I've basically stepped away from keeping current for about 7 years.

So, the hypos at night are sometimes real, and I wake and treat those (and yep, I can often 'overtreat', which will mean I get into the yo-yo cycle). There have been a few in the 3.5-4.0 range where I haven't woken and they've been like that for several hours, although I don't actually consider these necessarily to be 'real' hypos due to the compression low issue and that Libres can tend to 'under read'. I also think to some extent the consultant was getting massively bogged down in the readings I'd had a fortnight before - where I'd had a sensor fail, and it refused to read above 4.5 at any point for 48 hours (I had, for the first time ever, a LO on a Libre, which turned out to be 7.2 on a fingerstick) and I replaced it.

Happily, despite my earlier despair (you may note the time of day I wrote my original post!), I think I'm on the verge of solving the issue.

Background here for what it's worth and in case it helps:

• Q4 2023 - used to take 32u Tresiba + Fiasp (with massive correction doses needed, basically 1u per mmol). After having a lot of yo-yo lows combined with poor hypo discipline (half a Haribo sharing bag, anyone?), I was gaining weight so I decided to massively ramp down my Tresiba. This worked to level things off.
• Q1 2024 - now on 22u Tresiba, things are going well. I now actually start to dial it down even more, down to 18u.
• March 2024 - problems start to creep in - the Fiasp seems to get worse, correction doses now basically 2-3u per mmol, yo-yos starting again
• April 2024 - consultant visit, told I'm taking too much Tresiba, also advised maybe try a different bolus insulin. Now down to 16u Tresiba, move to Novorapid. Even worse. Now my BGs won't go below 10, despite taking burning through a whole cart of Novorapid in three days.
• May 2024 - exasperated post and then ramp up the Tresiba from 16u to 24u. Stuck with the Novorapid. Day 1 of the new regime bring massive dawn phenomenon (going from 5 to 12 in the space of 30 minutes), one relatively small correction dose actually seems to sort this out. Days 3 and 4 and my BGs basically level off to hover around 6-8, a little more than I'd really like, but liveable, and no major swings. The big thing at this point is finding that correction doses now seem to kick in at around 30-40 minutes rather than the 'never' I was getting with Fiasp.

Long story short...at the moment, it seems like my basal was just set too low and I'd got in the situation where my bolus was having to make up the shortfall (which might also explain why it seemed like Fiasp was acting more like Insulatard in my case...because unintentionally, that was how I was using it). I'll see how I go over the weekend.

But again, thanks everyone for thoughts and support - plenty to digest here. I'll have to update my avatar as it's even more out of date than my diabetes knowledge!

 

[rebrascora]

Pleased you have found some stability since that first post in this thread and that a basal increase seems to have settled it along with the change to NR. I always find it quite amazing how a relatively small increase in basal units deals with an issue that was taking 5 times that amount bolus insulin (plus mega frustration) to firefight.

I always know when I am getting really frustrated with my levels and battling to keep on top of them, that I need a basal increase. I used to resist increasing my basal but the relief is immense when that small increase suddenly means you are back in calm waters again and only needing regular amounts of bolus insulin for meals and not having to inject corrections every hour or two.
I am now really proactive both with increasing it when I need to but when I feel it gets above a level where I start to put on weight, I make the effort to do more exercise and that enables me to reduce it again. 22-24 units of Levemir a day for me is about where I hold my own weight wise. 20units a day enables me to lose weight.... but of course I need to do the exercise to enable me to lower the dose. It is no good lowering my dose and running high as I just have to increase my bolus insulin to bring my levels down, so I don't achieve weight loss. Not saying that insulin causes me to put on weight because it doesn't, but for me exercise is key, especially as I don't want to mess with my diet, so knowing that level of basal where the balance tips into weight gain or weight loss acts as a bit of a trigger for me to get off my backside and cover more miles. Of course things like illness and medication can and do impact basal needs, so you have to take that into consideration too. Sorry for the ramble but it is sort of pertinent. 🙄

 

[DeusXM]

Not a ramble at all - the experience you've outlined is absolutely identical to the one I've always had, and that in itself is a huge comfort, thank you.