Rick, sorry I started this reply late on Sun eve and fell asleep while typing; so tried again early Monday, then became entangled in family needs. My G7 sensor most unusually went haywire this evening: it stopped displaying on my phone, but fortunately continued displaying on the stand-alone reader. So during the evening I've been in the 3's, but ended up overtreating that and got up to 16 by midnight. Now, with a correction taken, the lag between sensor from interstitial blood and fp + test meter is very noticeable and slightly disconcerting.
Net outcome is that some of my reply is overtaken by other responses and in parts now possibly less relevant.
Hi, thanks for your quick reply. In answer to your questions, I am using the FreeStyle Libre 2. I have the alarm set for 5.6 mmol and this is what alerted me to the crash.
Libre 2 noted. Did you take a finger prick test to confirm that you really were hypo? I ask partly to find out if you also do have satisfactory natural hypo response awareness; Libre can mislead the user into convincing them they are hypo when actually not. True medical hypo is actually 3.5, but "4 is the floor" seems to have been appropriate when most folk had no CGM and could only rely on how they felt (hypo symptoms coming along) or a finger prick test result.
I followed the rule of 15 but it took me a number of goes with the high glucose products before the level began to rise. I then had my breakfast a couple of hours later, took my carb counted dose of insulin only for it to crash AGAIN. Hoping this isn’t repeated with lunch!
It is not unusual for one hypo to lead into a second or more. There is some medical precedent and explanation for that.
Many of us treat a hypo as needed with a high GI response, such as Dextrose, sweets like jelly babies or drinks like fresh orange juice or lucozade. Such is the individuality of each of us we not only have preferences for the taste of each but respond better to one treatment in comparison to another high GI product. Trial and learning should become a massive feature of your life for months, perhaps years, to come.
Swallowing some juice quickly may not get a faster response than lingering and sucking sweets and/or jelly babies. In our case with no panc'y, thus no natural digestive enzymes, saliva is probably the fastest way of getting those fast carbs metabolised and thus raising your BG. I need Creon with almost everything I eat, but never take Creon with a hypo response food.
Like you I have no pancreas whatsoever so my diabetes is also ultra brittle. In the short space of time I have noticed the rapid change from one state to another. The frustrating thing was yesterday was the first time I have managed to keep it under some sort of control so I fooled myself into thinking I was getting the hang of it. Evidently not!
There seems to be a broad consensus that we can't truly control our D. Even if you could do a rapid analysis across the 42 (so far) (41 for men) pre-determined factors that can affect our BG .... and from that analysis arrive at the optimum response solution for low or high BG treatment ... your D may still not behave how you wish. So your astutely described "some sort of control" can be frustratingly still wrong. So many of us aspire to best management of our D, rather than control; gracefully accepting that managing D is as much an art as a science.
Since stress is one of those 42 factors, that graceful acceptance that yesterday was not ideal and having learnt any lessons we might spot - move on with simple acceptance and avoid the stress business. Easy said, remarkably difficult to do in practice.
In terms of meds, I am on Lantus (20U per evening) for the basal dose. My practice nurse has switched me into Levemir and I was wondering whether it was a 1:1 conversion. I intend to see the nurse to follow up on this but would be interested to know any insights you may have. For fast acting I use NovoRapid (about 4-6U per meal depending on the number of carbs, assuming 1U = 10g). Does all this sound about right or near to what you’re taking. I know it’s a unique picture though.
Lantus (changing to Levermir) and NovoRapid noted; good that you have gone straight into Multiple Daily Injections ( MDI). 1u to 10gm carbs is a standard start assumption. Your low fat diet to assist after your Chyle leak might make that assumption misleading because apart from being without panc'y, gall bladder and spleen (and thus now already a long way from a standard human) your body needs fats and your necessary low fat diet is a further step away from being standard.
This, as far as I'm concerned, is further clear evidence that treating and managing T3c is not "standard". We each have some reason for our D that sits outside the autoimmune circumstances of T1 or insulin resistance that very broadly (and too crudely) encapsulates T2. That trigger might require other meds or lifestyle practices that can even contradict normal management of our D.
Cautiously, yes what you are doing with MDI does sound about right. The precise nos can vary hugely individually.
But, like
@martindt1606, my non-medical view is that switching you from Lantus to Levermir is worrying. Not only is this too soon since your Surgery for anyone to have any clear justification, as far as I'm concerned it introduces a further unnecessary factor into the complex business of managing your D: now you need to get your basal right twice daily as the foundation for your bolus needs. That is difficult enough once daily.
My basal is the very long lasting Tresiba, which I have optimised to keep me very stable through the fasting hours (really easily done thanks to CGM - just check the night time graphs) and all other BG management is done by managing my food, my bolus, and my lifestyle including rest / sleep, exercise and activity. Whatever my Tresiba is bringing to my daily daytime parties is a fixed entity and all the while it's keeping me stable and safe at nights I don't need to even consider what my basal is doing in the background during the day. It needs up to 3 days for Tresiba dose changes to take effect and that inflexibility is it's fundamental strength. I only change my Tresiba dose 2-4 times a year. I was started on Levermir, am and pm equal doses and for 12 months I had no BG stability whatsoever. CGM along with (coincidentally) Tresiba instead of Levermir made a huge difference.
Did your Practice Nurse explain why she changed you from Lantus, or how she would be helping you do basal testing over the next few days to get your basal right? Has she got the time or experience for this necessary process? Or is she changing it because it is what she sees in her few insulin dependent patients passing through for their annual D checks?
Moving on, you will be aware that your brain demands glucose, constantly. You might not know that, I think interestingly, your brain doesn't need insulin to take glucose from your blood. Your 4-6 units of NR infers that each of your main meals is in excess of 30 gms of carbs and in his excellent book "Think Like a Pancreas" the author Gary Scheiner suggests that 30gms is enough to satisfy your brain and stop the alternative default of metabolising proteins and fats into glucose. There is nothing wrong with your body using proteins or fats to create glucose - UNLESS you need to count carbs for bolus injections; this adds unnecessary complexity to the carb counting process with different metabolism timings between carbs , proteins and fats; that complexity can introduce more error into this science based "art". I read "Think Like a Pancreas from cover to cover and found it extremely helpful; I wasn't offered CGM for my first 12 months and had zero BG stability for 12 months. My improved knowledge made a huge difference just as my Libre 2 arrived and Tresiba instead of Levermir was a further winning factor.
I can’t say I have been too impressed so far with the help I have received from HCPs. I was fortunate to have the operation done privately through work but the downside of that was the diabetes support afterwards was dreadful. They essentially gave me a couple of pens, a rough dosing regime and sent me on my way. My local practice nurse has been great but I fear I may share your experience where I’m lumped in with the Type 1s.
At least better to be as if T1 and your Libre 2 is accepted by the NHS as a norm for your medical needs. You ought to be able to get a referral to a Hospital based NHS Diabetes team should you need it. But how much NHS time you can get is questionable. I am extremely fortunate to get my D support from the same Hospital that did my Whipple's back in 2020 and provides my Oncology support. That Hospital, the Churchill in Oxford, is also a lead Centre in England for Diabetes and Islet transplants. I live in Berks and mention this because different Trusts don't trust; so I've deliberately made sure my Hospital based secondary care come under a single Trust.
How long after your total pancreatectomy did it take for you to be able to function again? I knew this would be hard but it has truly knocked me for six. Can I ask how much of a normal life you still lead? Do you still work, exercise, travel etc.? I just want to know that I will return to some semblance of normality without having to constantly fret about my blood sugar level. What isn’t helping me is I had a chyle leak as part of my operation and I am on a ridiculously low fat diet until it heals. Feel stuck in limbo.
I spent 3 months recovering from Surgery - increasingly walking further almost daily. Because I had no CGM I had many hypos while out walking. Covid and lockdown was firmly in play during this period. I felt I was generally improving most days, getting stronger and more active. I had digestion issues and bowel unreliability. All too often my body would cause me great embarassment; it turned out that there was a malabsorption problem which needed a Gastroenterologist to identify and prescribe an abx, that needed approval from higher up the admin chain. I still have a certain amount of bowel unreliability.
I was already fully retired so my "normal" life was already extremely varied and holidays or away breaks were part of that normal - but none of it doable because of Covid. I started adjuvant (precautionary) chemo after 4 months; I struggled badly with that and it was stopped early because some latent neuropathy from frost bite was being made a lot worse by the chemo. The neuropathy seems irreversible and I walk like a drunkard, because without permanently looking down my soles don't seem willing to talk to my brain and anticipate uneven ground or keep me walking in a straight line!
During 2022 I found myself in Hospital 4 times; twice for routine minor procedures including Surgery on my Whipple's scar to fix a troublesome incisional hernia. That was painful for a while afterwards. The 3rd time was a true emergency: my original Whipple's had created scar tissue that unexpectedly snagged and blocked my colon. So a 3rd opening of my Whipple's scar was needed and that cost me 3 weeks in Hospital. Finally in late 2022 after constant bladder leaking from my original Whipple I had a "laser green prostatectomy" which needed a couple of days in Hospital. My big difficulty each time was Hospital food and carb counting. During my 3 week stay, out of sheer boredom, my MDI included many daily corrections. I'd carb count, prebolus a bit low, see what arrived and then correct a short while later. possible thanks to CGM plus being fairly bedbound and very inactive.
Exercise and general activity has a big influence on a carb count and bolus dose calculation. Right now your mobility is probably quite limited after your Surgery. So you can invest time in trying to determine the carb count accurately; then apply an insulin to carbs ratios and make a decision about how much or little prebolus time is needed. Once exercise and activity comes in to the science I can easily apply a 50% reduction of that bolus dose because of exercise/activity. Trial and learning is absolutely key.
We now travel again. I went away without my wife for a week in mid 2021, when Covid lockdown permitted. Eating out was challenging, but I survived! I developed a close dialogue with the Premier Inn chef, who was happy to help and I think found the professional challenge interesting. Waiting staff quickly get defensive and go into panic mode; but most chefs are fully accustomed to having diners with a raft of odd dietary needs. Initially I was a bit shy about injecting in public, and would go to the Gents to jsb. But I quickly dumped that malarkey and now inject wherever I happen to be when an injection is needed.
Thanks for all your kind words everyone. Just to know there are people out there I can talk to about this other than frightening both myself and my OH means a lot.
Here’s a question related to tech. Believe it or not I spent the first years of my career developing glucose sensors and now develop drug delivery systems. With T3C is it better to use a pump or inject directly? Will I be offered these on the NHS? Is it the sort of thing I will need to fight for. I want this process to be as hassle free as possible.
I agree with Barbara (
@rebrascora) that getting some time masterring MDI is absolutely essential. There is a noticeable recent improvement on pump availability from the NHS along with hybrid closed loop tech. But I suggest be patient and learn the basics; pumps do go wrong and you need to fall back on MDI totally naturally.
All for now. Keep asking, there's bucket loads of experience within the Forum membership.
