At a loss with Father in Law

[anniemillie]

Hi, this is my first post. Strap in it’s a long one!

My father in law (86) has been diabetic for 30
years, first type 2 then type 1. He’s also the only person I’ve ever known who has survived pancreatic cancer. He had his pancreas removed about 10 years ago. He has managed it really well and is very conscientious about his diet.

He’s been on dialysis due to end stage kidney failure for the last year. Again he’s been very conscientious about the foods he should avoid and has generally been coping very well.

Twice in the last six months, his dialysis lines have got infected. As they’re a direct path to his veins, this has resulted in sepsis. The first time didn’t affect him too badly long term but the second, about 6 weeks ago, seems to have really affected him.

His blood sugar is all over the place. He’s been in and out of hospital about 10 times. (The longest he’s managed with going in is about 36 hours). He’s had two fairly long stays but most of the time they check him over, tell him he’s fine and kick him out (once at 3am with a blood sugar level of 3 but that’s a separate issue) He’s had his insulin changed but the pattern seems to be that his blood sugar rises all day then plummets overnight. He currently spends about 12% of the time in the dangerously low zone and has been down as far as 2.4 according to his Libre device.

The hospital keeps dismissing it as him not managing it properly but he is (or he’s trying to at least). I think they think he’s old and his memory’s failing but he’s sharp as a tack and has about 20 years’ experience of injecting. He’s had moments of confusion due to the hypos but is generally very with it when lucid.

We live 3 hours away and there’s no other family (we’re taking steps to address this but that’s a separate issue). He can’t come to stay with us due to his dialysis. I can work from home (my husband can’t) so have stayed with him for a few days to try to get him back on an even keel but have commitments at home that mean I have to come back after a couple of days and even with really close supervision, it’s still happening.

The diabetes team have now told us to tolerate the highs to help avoid the lows so he’s not having any corrective doses of insulin after his evening meal. I’m writing this at 5am as I’ve been up with him four times and have now given up on sleep. Overnight (when his blood sugar usually drops very low) he hasn’t dipped below 27. It hasn’t changed since 3pm yesterday despite 5 units of Novorapid at 1pm with a small lunch and 8 units at 6pm when he again had a small meal. These amounts are what he has now been told to take and are dependent on his pre-meal blood sugar level. He’s drinking as much as his dialysis team allow him.

There has to be something underlying causing this but the hospital just don’t seem to want to know. They say they’ve run tests and there is nothing. We’re at a loss as to what to try next. Does anybody have any thoughts / experience of something similar please?

 

[rebrascora]

Hi and welcome.

Really sorry to hear your father in law is having these problems and is struggling to balance things at the moment.

First thing to note is that he is actually Type 3c not Type 1 or Type 2. Type 3c can be more tricky than Type 1 which is tricky enough as it is! Type 3c is the designation given to people who have damage to their pancreas due to disease, alcohol, trauma or surgery. Your FIL obviously qualifies for this category because he had cancer and now surgery to remove his pancreas.

Does he take CREON (pancreatic digestive enzymes) as well as insulin and which slow acting (basal) insulin does he take?

Are you checking the nocturnal hypos with finger pricks before treating? If you lie on the sensor it causes what we call a "compression low", especially if it is not optimally located to avoid this happening. Just wondering if you might be responding to the low alarm and treating lows that are not actually lows and then ending up high in the morning because of the hypo treatments.

If you can post a photo of his Libre or Dexcom graph so that we can see what is going on. Sometimes you can spot a compression low because it can have a particular profile. It would also help us to understand better what is happening with his levels in general.

What does your FIL use to treat hypos and does he check recovery with a finger prick or just rely on his sensor. Again this is a time when the sensor will give misleading info and even if he is genuinely hypo it will often cause you to over treat hypos, so checking recovery 15 mins after hypo treatment with a finger prick is really important because the sensor will often show his levels continuing to drop fast at that 15 min post treatment point whereas a finger prick will usually show you are recovering.

Another tip is to chew hypo treatments very well if they are solid or swill liquid treatments around in your mouth because they will be absorbed quicker by the cells inside the mouth than in the stomach and of course, the mouth is closer to the brain which is where you want the glucose to get to first.

 

[rebrascora]

Going to tag @Proud to be erratic who also had pancreatic cancer and then his pancreas surgically removed as he will give you more insight into the additional complications of Type 3c.

 

[Proud to be erratic]

Hello @anniemillie, I'm sorry to read about what a tough time your father-in-law is having.

I agree that technically his diabetes diagnosis now should be altered to Type 3c, but it's a mute point whether that would now make any difference for his treatment - since he is already recognised as Type 1 and thus his total insulin dependency is medically acknowledged.

One's pancreas is an amazing organ. As well as producing the hormone insulin (which makes it possible for glucose in our blood to be moved into our cells, muscles and organs) it also makes the hormone glucagon (which tells the liver to release glucose from the liver's glucose store, when BG is low. Also the hormone Somostatin (which provides a regulating function between insulin and glucose in our blood). Plus making vitamins A, D, E and K . Finally the vast majority of our digestive enzymes are made by our pancreas: food in the mouth triggers a message to our pancreas "get ready guys, food is coming"; a tiny bit of extra digestive enzymes comes from saliva - enough to process hypo response treatments; no digestive enzymes means how much of what one eats is actually digested, becomes a total lottery. Erratic digestion is an understatement.

So your father-in-law has been his own pancreas for the last 10 yrs: understanding what he is missing and taking compensatory steps when necessary. It is a full time job. Alas, this understanding of what being panc'yless means and needs is not commonly understood by Health Care Professionals (HCPs). It is a very rare condition within the diabetic community and he is a very rare and resilient individual.

Meanwhile, I strongly suspect your father-in-law's end stage kidney failure has, understandably, become the central focus of his treatment while in Hospital. And managing what one's kidneys are not doing (or doing intermittently) makes managing someone without a panc'y even more complicated. His age is not on his side. Multiple organ failures become increasingly possible along with possible incremental cognitive decline, accelerated by considerable Glycaemic Variability (GV).

Put all of that onto a seriously creaking NHS is a real challenge for all parties: patient, nearest and dearest, as well as the NHS; which is not equipped to provide the comfort and care that a hospice can do. About 3 yrs ago I had some counselling, which I didn't particularly need and was offered because I was looking for some guidance on mindfulness. My counsellor concluded that I was struggling with anticipating my demise and worrying about "landing my plane satisfactorily". It was an interesting moment; something to reflect on!

There has to be something underlying causing this but the hospital just don’t seem to want to know. They say they’ve run tests and there is nothing. We’re at a loss as to what to try next. Does anybody have any thoughts / experience of something similar please?

None of the above specifically helps you to help your father-in-law, but perhaps could help manage your expectations. I'm 75 and there are days when I feel "off" and (significantly I think) I'm not sure whether my D Is giving me a bad day or I'm just enjoying the aches, pains, trials and tribulations of getting older. The Hospital are highly likely to be getting far more indicators from their tests to be able to isolate and treat each ailment - which is also not a practical proposition. Somehow your father-in-law needs a care environment that, in my non-medical opinion, focuses on his end stage kidney failure first and foremost while somehow keeps his BG reasonably steady in the background. My isolated experience has been that dialysis does not go on forever. A plan for care during and after dialysis is needed. What is your father-in-law's perspective?

 

[anniemillie]

Hi and welcome.

Really sorry to hear your father in law is having these problems and is struggling to balance things at the moment.

First thing to note is that he is actually Type 3c not Type 1 or Type 2. Type 3c can be more tricky than Type 1 which is tricky enough as it is! Type 3c is the designation given to people who have damage to their pancreas due to disease, alcohol, trauma or surgery. Your FIL obviously qualifies for this category because he had cancer and now surgery to remove his pancreas.

Does he take CREON (pancreatic digestive enzymes) as well as insulin and which slow acting (basal) insulin does he take?

Are you checking the nocturnal hypos with finger pricks before treating? If you lie on the sensor it causes what we call a "compression low", especially if it is not optimally located to avoid this happening. Just wondering if you might be responding to the low alarm and treating lows that are not actually lows and then ending up high in the morning because of the hypo treatments.

If you can post a photo of his Libre or Dexcom graph so that we can see what is going on. Sometimes you can spot a compression low because it can have a particular profile. It would also help us to understand better what is happening with his levels in general.

What does your FIL use to treat hypos and does he check recovery with a finger prick or just rely on his sensor. Again this is a time when the sensor will give misleading info and even if he is genuinely hypo it will often cause you to over treat hypos, so checking recovery 15 mins after hypo treatment with a finger prick is really important because the sensor will often show his levels continuing to drop fast at that 15 min post treatment point whereas a finger prick will usually show you are recovering.

Another tip is to chew hypo treatments very well if they are solid or swill liquid treatments around in your mouth because they will be absorbed quicker by the cells inside the mouth than in the stomach and of course, the mouth is closer to the brain which is where you want the glucose to get to first.

Thank you for taking the time to reply. I was trying to short cut a bit - what I was trying to say was he was already type two before having his pancreas removed so has been dealing with this and managing it really well for a very a long time. Yes he monitors with finger prick as well and his hypos have been recorded by the hospital when he’s been in so I don’t think they’re false readings.

I’ve attached photos from his Libre from last weekend. He’s not always the best at keeping his phone with him but they do show a pattern. I’m not with him at the moment to take more. The issue this weekend is that his blood sugar is permanently high, his insulin isn’t having any effect, it’s not even dipping a little bit, he’s been at 27 since 3pm yesterday. He’s had a total of 21 units of Novorapid in that time as well as the 7 of Lantus (spelling?) he has every morning. We’ve been told not to correct that at the moment as I think they were concerned he was over-correcting but I don’t understand why it’s not coming down even a few points.

I’ve watched him manage it from afar for 20 years but the minutiae are new to me so I’m still learning!

Edited to add: yes he takes Creon.

 

[anniemillie]

Hello @anniemillie, I'm sorry to read about what a tough time your father-in-law is having.

I agree that technically his diabetes diagnosis now should be altered to Type 3c, but it's a mute point whether that would now make any difference for his treatment - since he is already recognised as Type 1 and thus his total insulin dependency is medically acknowledged.

One's pancreas is an amazing organ. As well as producing the hormone insulin (which makes it possible for glucose in our blood to be moved into our cells, muscles and organs) it also makes the hormone glucagon (which tells the liver to release glucose from the liver's glucose store, when BG is low. Also the hormone Somostatin (which provides a regulating function between insulin and glucose in our blood). Plus making vitamins A, D, E and K . Finally the vast majority of our digestive enzymes are made by our pancreas: food in the mouth triggers a message to our pancreas "get ready guys, food is coming"; a tiny bit of extra digestive enzymes comes from saliva - enough to process hypo response treatments; no digestive enzymes means how much of what one eats is actually digested, becomes a total lottery. Erratic digestion is an understatement.

So your father-in-law has been his own pancreas for the last 10 yrs: understanding what he is missing and taking compensatory steps when necessary. It is a full time job. Alas, this understanding of what being panc'yless means and needs is not commonly understood by Health Care Professionals (HCPs). It is a very rare condition within the diabetic community and he is a very rare and resilient individual.

Meanwhile, I strongly suspect your father-in-law's end stage kidney failure has, understandably, become the central focus of his treatment while in Hospital. And managing what one's kidneys are not doing (or doing intermittently) makes managing someone without a panc'y even more complicated. His age is not on his side. Multiple organ failures become increasingly possible along with possible incremental cognitive decline, accelerated by considerable Glycaemic Variability (GV).

Put all of that onto a seriously creaking NHS is a real challenge for all parties: patient, nearest and dearest, as well as the NHS; which is not equipped to provide the comfort and care that a hospice can do. About 3 yrs ago I had some counselling, which I didn't particularly need and was offered because I was looking for some guidance on mindfulness. My counsellor concluded that I was struggling with anticipating my demise and worrying about "landing my plane satisfactorily". It was an interesting moment; something to reflect on!

None of the above specifically helps you to help your father-in-law, but perhaps could help manage your expectations. I'm 75 and there are days when I feel "off" and (significantly I think) I'm not sure whether my D Is giving me a bad day or I'm just enjoying the aches, pains, trials and tribulations of getting older. The Hospital are highly likely to be getting far more indicators from their tests to be able to isolate and treat each ailment - which is also not a practical proposition. Somehow your father-in-law needs a care environment that, in my non-medical opinion, focuses on his end stage kidney failure first and foremost while somehow keeps his BG reasonably steady in the background. My isolated experience has been that dialysis does not go on forever. A plan for care during and after dialysis is needed. What is your father-in-law's perspective?

Thank you for replying.

He knows the dialysis won’t keep him going for ever and is resigned to that. He’s managed very well until now. My mother-in-law died in August and he was her main carer, even though he was actually more physically unwell than her most of the time. She had mental health issues and was very immobile but until the last few weeks of her life wasn’t unwell. He’s on his own now and is very tired after his dialysis so we’ve arranged for a carer to be there when he gets home to make sure he eats and takes his insulin (we don’t know that he wasn’t but we don’t know for certain that he was either). The fact he was having hypos suggests he was though. He’s in the process of buying a flat in an assisted living place which will offer 24 hour emergency care and he can pay for more support as needed.

He’s spent his whole life being told what to do, both in work (he was in the army then police) and by my late mother-in-law so he doesn’t have a perspective, he doesn’t know how to form an opinion. That sounds mean but it’s the reality! He’s doing what we tell him really. We’d rather he moved to somewhere near us but he’s determined not to move his dialysis treatment.

 

[Proud to be erratic]

Your earlier post reinforces my observation that your father-in-law is a rare but resilient person. So much to deal with, in a quiet but steady manner from an unrelenting environment.

There are some 40+ identified factors that affect our BG. The amount and timing of insulin are obviously part of the mix of those factors, as is timing of the insulin dosing. Stress, in its various forms from medical, physical or mental origins can play a massive part in altering (usually elevating) BG. As a panc'yless T3c some of the automatic counters to stress are not available to your father-in-law. Medication and less visible ailments also play a big part in elevating BG. Overall I'm not so surprised that his BG is currently so high.

Coming from his original background of having been T2, that tells me his body has an unhelpful background of having a high natural resistance to insulin - previously his own home grown and now the modern engineered insulins. One bit of me says a back to basics review of his insulins is needed: reviewing his basal (Lantus) first, to get the background longer lasting insulin firmly and strongly "underpinning" whatever glucose his body is internally generating, irrespective of meals and digestion. When one's basal is right, then the faster bolus (NovoRapid) dosing can be tweaked to better match short term needs from meals, or for making corrections. However, another bit of me is saying would I want to get tangled up in insulin reviews and the necessary involvement of me in this. Its stressful to do concientously and changing insulins is something we may have to do, but certainly not rush to do. Change = disruption of our known "norms".

Personally, again I'm not medically qualified, I think twice daily Lantus would be better replaced by the much longer lasting basal of Tresiba. Established on that, with its stable release hour by hour, PLUS an inevitable (for someone at age 86) even lifestyle of modest activity, regular and repeatable meals - then increased regularity can hugely help steady anyone's BG. But before that "ideal" is the reality of house selling, buying and moving etc, in conjunction with dialysis to fend off end stage kidney failure. All the while feeling dreadful from existing, seriously elevated BG. When I'm somewhere above 15 for any length of time it makes me feel yuk, lethargic and confused by my body's own internal signals.

With his current seriously elevated BG is your father-in-law, or anyone else, checking his ketones? The risk of diabetic ketoacidosis (DKA) is very real. If you do a Google search add UK into the search question to restrict the complexity of possible answers; little point in knowing what other Nations think or do, when you need the NHS to help!

Once again I'm sorry this doesn't provide you with instant solutions, just a bit more background understanding.

 

[anniemillie]

Your earlier post reinforces my observation that your father-in-law is a rare but resilient person. So much to deal with, in a quiet but steady manner from an unrelenting environment.

There are some 40+ identified factors that affect our BG. The amount and timing of insulin are obviously part of the mix of those factors, as is timing of the insulin dosing. Stress, in its various forms from medical, physical or mental origins can play a massive part in altering (usually elevating) BG. As a panc'yless T3c some of the automatic counters to stress are not available to your father-in-law. Medication and less visible ailments also play a big part in elevating BG. Overall I'm not so surprised that his BG is currently so high.

Coming from his original background of having been T2, that tells me his body has an unhelpful background of having a high natural resistance to insulin - previously his own home grown and now the modern engineered insulins. One bit of me says a back to basics review of his insulins is needed: reviewing his basal (Lantus) first, to get the background longer lasting insulin firmly and strongly "underpinning" whatever glucose his body is internally generating, irrespective of meals and digestion. When one's basal is right, then the faster bolus (NovoRapid) dosing can be tweaked to better match short term needs from meals, or for making corrections. However, another bit of me is saying would I want to get tangled up in insulin reviews and the necessary involvement of me in this. Its stressful to do concientously and changing insulins is something we may have to do, but certainly not rush to do. Change = disruption of our known "norms".

Personally, again I'm not medically qualified, I think twice daily Lantus would be better replaced by the much longer lasting basal of Tresiba. Established on that, with its stable release hour by hour, PLUS an inevitable (for someone at age 86) even lifestyle of modest activity, regular and repeatable meals - then increased regularity can hugely help steady anyone's BG. But before that "ideal" is the reality of house selling, buying and moving etc, in conjunction with dialysis to fend off end stage kidney failure. All the while feeling dreadful from existing, seriously elevated BG. When I'm somewhere above 15 for any length of time it makes me feel yuk, lethargic and confused by my body's own internal signals.

With his current seriously elevated BG is your father-in-law, or anyone else, checking his ketones? The risk of diabetic ketoacidosis (DKA) is very real. If you do a Google search add UK into the search question to restrict the complexity of possible answers; little point in knowing what other Nations think or do, when you need the NHS to help!

Once again I'm sorry this doesn't provide you with instant solutions, just a bit more background understanding.

Thank you. We’re keeping an eye on his ketones, they’re usually around 1 so not ideal but could be a lot worse.

He is indeed very resilient. He’s also had a heart attack and triple bypass. We think he’s the proverbial cat and is on life seven or eight by now!

 

[Proud to be erratic]

Sorry, @anniemillie, one other thing that occurred to me. In your opening post you said your father-in-law went from T2 to T1. Was this medical change of diagnosis after his pancreatectomy? I ask to be sure that some 10 yrs ago his surgery and discharge from Hospital then left him with a Hospital written T1 diagnosis (or possibly as if T1) - rather than him with a residual T2 diagnosis still on his medical notes. This is important since as T2 his treatment in hospital could be different from treatment as T1 or panc'yless T3c.

A couple of days ago I had my annual GP organised diabetes review and the HCP doing it was (initially) oblivious to my being panc'yless. He hadn't read my medical notes and was just "doing his job". I had to "guide" him to do his checks diligently!

 

[anniemillie]

Sorry, @anniemillie, one other thing that occurred to me. In your opening post you said your father-in-law went from T2 to T1. Was this medical change of diagnosis after his pancreatectomy? I ask to be sure that some 10 yrs ago his surgery and discharge from Hospital then left him with a Hospital written T1 diagnosis (or possibly as if T1) - rather than him with a residual T2 diagnosis still on his medical notes. This is important since as T2 his treatment in hospital could be different from treatment as T1 or panc'yless T3c.

A couple of days ago I had my annual GP organised diabetes review and the HCP doing it was (initially) oblivious to my being panc'yless. He hadn't read my medical notes and was just "doing his job". I had to "guide" him to do his checks diligently!

He was T2 for about 15 years, then T1 and about 5 years later had the cancer. He was lucky that he was T1 because it was some tests due to the T1 that led to finding the cancer before he had any symptoms. His notes look accurate to me but I had to tell the nurses in hospital that his insulin had changed the other day. It was only then they checked his notes and read the final paragraph.

 

[Proud to be erratic]

Thank you. I do find that neither GPs nor Hospitals always have the necessary due diligence. It's safer for me to gently nudge!

As a tiny point of detail, someone does not go from T2 to T1 as some sort of progression of diabetes. It comes about because the original T2 diagnosis was incorrect; historically T1 was considered unique to children and thus diabetes in adults could only be T2. However this doesn't exclude the possibility of T2s sometimes needing extraneous insulin to help overcome their naturally high levels of insulin resistance. This misconception is much less common today, but recognition of T3c by HCPs is still a challenge virtually everywhere. It is now at least formally recognised by the NHS in its documentation, even if not always by its personnel.

In principle the diagnosis of type of diabetes is the start point, then the appropriate treatment path follows. It would be rare, except in the very early stages, for someone to be T1 and not needing insulin. It is an autoimmune condition that destroys someone's insulin producing capability. T1s are less than 10% of people with diabetes (pwd). T2s are more commonly treated with oral meds but do progress to becoming insulin dependent. T2s are alnost 90% of pwd. T3cs can be diagnosed as such solely from damage to their pancreas (other than the autoimmune circumstances) and might start with no meds (just activity) or oral meds, or basal insulin only, or full basal/bolus Multiple Daily Injections (MDI) as your father-in-law does. We are comfortably less than 1% of pwd.

 

[rebrascora]

@Proud to be erratic
Lantus can be split into two doses but is more often just injected once a day and it sounds like in this case it is just being taken once a day in the morning and seems to be a very small dose for someone who has no pancreas, so I suspect particularly from looking at those graphs that it isn't covering their needs and then then the large corrections are eventually bringing him down too fast and too far.

@anniemillie Looking at those graphs I suspect the Lantus dose is not enough and that he is over treating the hypos, causing his levels to then go too high. At least that is what that graph at 3am on 11th April appears to show.
What does he typically use as a hypo treatment?

Is he aware that Novo(not so)Rapid as we often refer to it acts over 5 hours and when your levels are very high like his in the mid teens or 20s, you become very insulin resistant and corrections take absolutely ages (at least 2-3 hours) to kick in and start working but will often be less effective because of those high levels. If he eats whilst levels are still very high then that gives the insulin extra work to do and levels remain high. What I do if my levels are in the teens is that I inject a correction and don't eat anything until they come down below 10 and ideally below 8, otherwise they will not come down and I will end up doing what we sometimes call a "rage bolus" where we get frustrated at our BG staying high and give another injection of insulin which we know is probably too much and too soon after the last one a\nd then that sets us plunging into a hypo.

Obviously these high levels and then the sudden drops and then high levels again are not doing his kidney failure any good at all.

You mention that his insulin was changed quite recently. Could that be the cause of this instability in his levels or was it instigated as a result of the problems he was having with his levels.
Which insulin(s) was he on before and what sort of dose?
Did he have Libre with the previous insulin(s) or is the Libre sensor system a new bit of tech to help him manage his levels? My guess is that he is responding to the Libre after treating his hypos rather than finger pricking to check recovery and the Libre may well be causing him to over treat them as a result and then end up too high again. Doing a finger prick 15 mins after eating/drinking your hypo treatment is really crucial as Libre will show you having dropped lower and continuing to drop, so it would be totally understandable to take more hypo treatment in that situation if you didn't know that you can't trust Libre at that time. It is an absolutely great bit of kit but it has limitations and quirks and after treating hypos is one of the main times when it is not reliable.

Also wondering what he has his Libre low alarm set at? Most of us set it above 4 so that it gives us time to prevent a hypo happening. I have mine set at 4.5 which is fine for me but I think @Proud to be erratic has his set much higher. Because people who have had their pancreas removed don't have Glucagon which tells their liver to release glucose when their levels go low, their diabetes can be more brittle and therefore they have to be extra careful about hypos, so I think your FIL may benefit from increasing his low alarm if he currently has it set below 5. He can then eat a jelly baby or two when the low alarm goes off and that should take him back up to about 8mmols without going too high.

As @Proud to be erratic says, you don't get Type 2 diabetes and then become Type 1, so I very much suspect that he was misdiagnosed as Type 2 initially and was always Type 1 or he perhaps was always Type 3c and there was some disease of his pancreas from the start, which was just assumed to be Type 2 until things progressed to him not responding to oral meds and needing insulin and I am guessing that a scan was done on his pancreas at that time perhaps because there was a DKA or sudden weight loss and the scan then picked up the cancer. It is not unheard of for people to develop precancerous cysts in their pancreas which affect pancreatic function and insulin production to a limited extent and if not detected because people are assumed to be Type 2, can then develop into cancer and obviously pancreatic function deteriorates and BG levels get dangerously high and people lose weight and are at risk of DKA.

I am afraid that diabetes is very complicated and unfortunately most GPs and nurses have very little understanding of it. The test for diabetes is the same whether you are Type 1 or Type 2 or Type 3c or any other Type.... yes there are more. It is the HbA1c test and a result above 47mmols/mol gets you a diabetes diagnosis. Most GPs assume, if you are a mature adult and perhaps a little overweight as many middle aged people are and you get a diabetes diagnosis, then you must be Type 2. They don't do any other tests unless you don't respond to dietary changes and oral meds and even then they often still don't do any tests unless.
I myself was assumed to be Type 2 initially at the age of 55 when I developed diabetes. Thankfully it only took a few months until I saw the consultant who spotted that my presentation was unusual and authorised Type 1 testing which came back positive that I was correctly diagnosed. There are many other members of this forum who were assumed to to be Type 2, some for many, many years before they got the correct diagnosis and were found to be Type 1 or indeed Type 3c.

I expect that a lot of what we are talking about will be confusing for you because it is so complicated and before we got diabetes it would have been like someone talking in a foreign language to us, but just really trying to explain your FIL's situation a little better and particularly that as a Type 3c without a pancreas he is a very special case and his diabetes will be harder to manage even than a normal Type 1 like myself.

The things I would focus on are raising his low alarm level to 5 or maybe even 5.6 on his Libre and not relying on Libre to assess recovery 15 mins after eating/drinking fast acting carbs to fix or prevent a low, but always doing a finger prick 15 mins after taking a hypo remedy.