Immunotherapy induced diabestes

[mbmep]

My husband has developed insulin dependant diabetes as a result of immunotherapy treatment for cancer. He was admitted to hospital back in May with DKA and has been getting to grips with the condition since then. Anyone else on here with the same thing? And I'm wondering what you have been told about the longer term. The oncology team and the scientific literature are quite clear that his beta cells are gone and he will need insulin for the rest of his life but his endo consultant seems to think that he might be able to move to metformin only once the immunotherapy has finished. He has just had a c-peptide test and we are awaiting the results. He has also been told he isn't eligible for DAFNE training as he isn't a 'proper' T1 despite being insulin dependant which seems crazy! We would welcome hearing about any other IID experiences. He finds the diabetes has had a more profound impact on his life than the cancer by the way.

 

[Amigo]

My husband has developed insulin dependant diabetes as a result of immunotherapy treatment for cancer. He was admitted to hospital back in May with DKA and has been getting to grips with the condition since then. Anyone else on here with the same thing? And I'm wondering what you have been told about the longer term. The oncology team and the scientific literature are quite clear that his beta cells are gone and he will need insulin for the rest of his life but his endo consultant seems to think that he might be able to move to metformin only once the immunotherapy has finished. He has just had a c-peptide test and we are awaiting the results. He has also been told he isn't eligible for DAFNE training as he isn't a 'proper' T1 despite being insulin dependant which seems crazy! We would welcome hearing about any other IID experiences. He finds the diabetes has had a more profound impact on his life than the cancer by the way.

I’m really sorry to hear this has happened to your husband mbmep as it’s a more rare phenomenon I understand but is known to happen. I had targeted therapy for my cancer which doesnt have the same application as immunosuppressants and I had already been diagnosed with type 2 when treatment started. Was it a treatment ending in ‘mab’ that he had? I’m very involved with the cancer communities and it’s incredibly unusual to hear of immunotherapy resulting in insulin dependent diabetes and the literature suggests that it’s often reversible. That may be why the endo consultant wants to wait it out to see what happens when the immunotherapy finishes. Any steroids needed during treatment can exacerbate things too.

The scientists seem to have an idea as to why this can happen as described here in technical terms;
’Human pancreatic islets lack CTLA-4 but instead express PD-L1 to protect them against immune cells. Pembrolizumab is a monoclonal antibody which binds to PD-1 and blocks this pathway. As a consequence, in the presence of pembrolizumab, pancreatic beta cells are susceptible to immune destruction resulting in diabetes.’

I know that doesn’t really answer your questions (and he may have had a different immunotherapy med) but I empathise with his situation because cancer and diabetes don’t always play nicely together as I know too well! My treatment had my previously stable levels on a rollercoaster course which I’ve been working to stabilise. It’s like fire-fighting on several fronts all at once.
Hope this can be resolved and that it turns out to be reversible. Just ridiculous that they’re preventing him from attending training however!

Sending best wishes for both conditions.

 

[mbmep]

Thanks for your reply. He is on Nivolumab and Ipilimumab. No steroids. I've read LOADS of medical literature (retired academic!) so understand the mechanism as to how it happened. But everything I've read suggests it isn't reversible hence my surprise and scepticism at the endo's remarks. Mind you, she came out with a lot of other stuff that seemed just wrong as well. We have asked for a transfer to an endo at the big County Hospital where his oncology team is as they have had 3 cases of IID in the past so we hope the endos there will have some experience of it.

The cancer he has is incurable so the immunotherapy is aimed at holding it at bay - very successfully so far - but it's all a huge deal to now have two incurable conditions at the age of 73.

 

[Amigo]

Thanks for your reply. He is on Nivolumab and Ipilimumab. No steroids. I've read LOADS of medical literature (retired academic!) so understand the mechanism as to how it happened. But everything I've read suggests it isn't reversible hence my surprise and scepticism at the endo's remarks. Mind you, she came out with a lot of other stuff that seemed just wrong as well. We have asked for a transfer to an endo at the big County Hospital where his oncology team is as they have had 3 cases of IID in the past so we hope the endos there will have some experience of it.

The cancer he has is incurable so the immunotherapy is aimed at holding it at bay - very successfully so far - but it's all a huge deal to now have two incurable conditions at the age of 73.

Yes I totally understand as I had (have) two incurable conditions develop at 54 and developed a second cancer as the result of immune dysregulation. The problem is trying to find linked understanding between medical disciplines and my experience suggests there’s scant understanding of the newer cancer meds, especially more targeted therapies with specialities outside of the cancer. Never the twain shall meet! I ended up in hospital with cardiac issues brought on as the result of cytotoxic cancer meds (with a known cardio toxicity profile) and the staff there described my treatment as ‘the meds they couldn’t spell’. Hardly then to be much understanding of negative interactions.

Let’s hope the new endo has had more exposure and experience of the issue. I‘ve had to learn about my cancer to molecular level and advocate hard, educating along the way. I’m sure you’ll be doing the same on behalf of your husband 😉. Good luck!

 

[rebrascora]

Hi and welcome from me too.

Really sorry to hear of your husband's battle with cancer and now diabetes. Which insulins is he on and how many units of each? If he is on a mixed insulin, then he would not qualify for DAFNE anyway even if you could argue a special case, because DAFNE is specifically designed for a basal/bolus insulin regime. There is an online version of DAFNE called BERTIE which you can self refer onto I believe. You can also request some input from a diabetes dietitian who can help get him started with carb counting if he isn't already.

Is his cancer related to his pancreas.... just wondering if he might qualify as a Type 3c which might make your case easier to argue. In fact, if his beta cells have been killed off by the medication, then damage has been caused to pancreas and you could reasonably argue Type 3c, which at least puts you in a special category which has precedent for access to DAFNE, Libre and even insulin pumps, although the latter is more rare

What is he/you finding particularly challenging about managing the diabetes? I appreciate that it is a very steep learning curve starting on insulin but just wondering if there are specific aspects of it that you are struggling with that we could perhaps help with?
Does he have Freestyle Libre sensors to monitor his levels or is he solely reliant on finger pricks? If not, he could apply for a free 14 day trial of the Freestyle Libre ie one sensor, if he hasn't used the system yet and he had an appropriate smart phone to use to scan it. Many of us self funded Libre sensors until we got them on prescription so that might be something to investigate (they are expensive but a game changer for most of us), but regardless of whether you could afford to self fund even on a very sporadic basis, I would urge you to go for the free trial. The system isn't perfect and you need to understand it's limitations, so come back to us if he gets one and we will fill you in with more info.

As regards his beta cells, the C-peptide test will show what sort of insulin production he has left. Hopefully it was a blood test he had done (rather than urine which is less accurate) and he prepped for it appropriately. Usually they like you to have had a meal an hour or two beforehand without bolus insulin, so that your BG levels are elevated and therefore whatever beta cells you have left should be stimulated to produce whatever insulin they can to reduce levels. The results are usually back in a week or two for that. I would be surprised if he has no insulin production left at all, but will be interesting to hear his results when he gets them.

If he is on the immunosuppressants long term to manage his cancer then I think it extremely unlikely that he will be able to come off insulin and manage with just Metformin. If he is overweight and needing large doses of insulin, then they may introduce Metformin as well as insulin, to help reduce insulin resistance and liver glucose output. The body however is a complex and surprising entity and sometimes you never can tell what will happen and beta cells can sometimes rejuvenate, if there are sufficient remaining and whatever is attacking them is removed, so the situation may hinge on that C-pep result.

 

[everydayupsanddowns]

Welcome to the forum @mbmep

Sorry to hear about your husband’s diagnosis, and the slightly weird way you’ve been supported by his Drs.

It’s interesting that this research paper suggests T1 following immunotherapy

Diabetes mellitus secondary to treatment with immune checkpoint inhibitors - PMC

Cancer immunotherapy has been one of the highlights in the advancement of cancer care. Certain immune checkpoint inhibitors bind to PD-1 on T cells and mediate an antitumour immune response. Given that immune checkpoint inhibitors are becoming part ...

www.ncbi.nlm.nih.gov

And then, of course there is the fancy ‘new’ Type 3c where diabetes follows pancreatitis, surgery, or some cancers.

Hopefully a more specialist and larger clinic will be more supportive?

In terms of DAFNE, it’s a shame he has initially been denied access to structured education because of his unconventional route into diabetes… If he’d like to get a handle on some of the same principles, there is a free online course by Bournemouth NHS trust, which covers much the same ground. If you are interested you can sign up here:

Bertie Diabetes

 

[mbmep]

He is on a basal/bolus regime, Lantus (21 units) and Novorapid (1:12 or 1:10). We have done the BERTIE course and know all about carb counting, read the Think Like a Pancreas book and he has got a Libre 2 on prescription. He's not overweight, quite the opposite. He has done the blood and urine c-peptide tests although the GP surgery had never done the blood version so he just fasted which doesn't sound right from what you have said but no guidance from the endocrinology consultant to do otherwise. Hence the surgery did a urine one as well. The diabetes nurse at the surgery is a star. It's not immunosuppression - immunotherapy is the opposite. It's a maximum of 2 years treatment and he has a year to go. He has mesothelioma which is cancer of the lining of the lung caused by exposure to asbestos so nothing to do with his pancreas.

He manages pretty well, it's just when the diabetes does seemingly random things to his BG levels but I guess that's just par for the course. And we are learning all the time.

 

[mbmep]

Welcome to the forum @mbmep

Sorry to hear about your husband’s diagnosis, and the slightly weird way you’ve been supported by his Drs.

It’s interesting that this research paper suggests T1 following immunotherapy

Diabetes mellitus secondary to treatment with immune checkpoint inhibitors - PMC

Cancer immunotherapy has been one of the highlights in the advancement of cancer care. Certain immune checkpoint inhibitors bind to PD-1 on T cells and mediate an antitumour immune response. Given that immune checkpoint inhibitors are becoming part ...

www.ncbi.nlm.nih.gov

And then, of course there is the fancy ‘new’ Type 3c where diabetes follows pancreatitis, surgery, or some cancers.

Hopefully a more specialist and larger clinic will be more supportive?

In terms of DAFNE, it’s a shame he has initially been denied access to structured education because of his unconventional route into diabetes… If he’d like to get a handle on some of the same principles, there is a free online course by Bournemouth NHS trust, which covers much the same ground. If you are interested you can sign up here:

Bertie Diabetes

Thanks, read that already! I think I've read just about every paper published on IID!

 

[rebrascora]

If you had the blood C-pep done at the GP surgery then it will likely be invalidated because the sample needs to be frozen within 20 mins of drawing it and sent off to the lab frozen and most GP surgeries don't have the facilities to do that. I had to head down to my main University hospital because the local minor injuries hospital didn't have the facilities to process it and if he wasn't given advice for preparing for either the urine or blood test, then the results will likely be of limited use, so it may be a good thing if the results come back spoiled and need repeating.
It does sound like you would be best getting a transfer to a different diabetes specialist who is hopefully more switched on to your situation and perhaps having one at the same hospital as your husband's oncologist will enable slightly more joined up thinking and collaboration.

If the medication has caused his immune system to wipe out his beta cells then I cannot see any reason why he would not be classified as Type 1.

So pleased that you have the Libre on prescription, so that is one positive. Are you aware of the limitations of CGM? The system is life changing but it isn't 100% reliable and it is important to understand it's quirks in order to get the best from it.
There is a list of the limitations of CGM and particularly Libre in the link below....

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...

forum.diabetes.org.uk

 

[trophywench]

ISTR that Type 3 diabetes categories range from 3a to 3g depending on what exactly caused the diabetes to occur. Yes we have gradually got used to Type 3c and its subtle idiosyncracities - but at the same time we haven't heard very much about the other 3s.

 

[Proud to be erratic]

ISTR that Type 3 diabetes categories range from 3a to 3g depending on what exactly caused the diabetes to occur. Yes we have gradually got used to Type 3c and its subtle idiosyncracities - but at the same time we haven't heard very much about the other 3s.

A couple of days ago I found a typed list of the secondary Types 3a - 3h. I don't have a reference source nor a digitall ink, but typed them as a note on my phone:

Type 3a diabetes. Type 3a diabetes is term designated for any forms of diabetes caused by genetic defects to beta cells (the cells in the pancreas that produce insulin).

Type 3b diabetes. Type 3b is any form of diabetes caused by genetic defects that affect the action of insulin.

Type 3c diabetes. Type 3c diabetes, also known as ‘pancreatogenic diabetes’, is a form of secondary diabetes, that may occur as a result of the pancreatic disorders such as pancreatitis, cystic fibrosis, hemochromatosis, pancreatic cancer, pancreatomy and some neonatal diabetic cases caused by pancreatic agenesis.

Type 3d diabetes. Type 3d is any form of diabetes that results from hormone disorders.

Type 3e diabetes. This form of diabetes is any diabetes that has been induced by chemical or drugs. For example, high doses of steroids, taken for an extended period of time, can lead to diabetes developing. Steroid-induced diabetes is therefore a form of type 3e diabetes.

Type 3f diabetes. This form refers to diabetes that develops as the result of an infection.

Type 3g diabetes. Type 3g refers to less common immune-mediated diabetes.

Type 3h diabetes. This form is for other genetic syndromes that may be associated with diabetes occurring (not sure there isn't some text missing).

@mbmep would a diagnosis of T3g apply? Even if it did, that wouldn't necessarily result in a referral for a DAFNE course if an Endo is so dogmatic to think your husband should be excluded anyway. That said I have mixed views about the benefits of DAFNE anyway. It was useful to spend a period of time in the company of other insulin dependent folk; but the rigid (narrow-minded and seemingly blind) adherence to the "Syllabus" meant every attempt to discuss CGM was abruptly curtailed because its not in the syllabus. 8 out of 10 had Libre prescribed. It felt downright dumb at those moments.

 

[mbmep]

Thanks for the list and for your interest. I'm not sure if it would be 3g or 3e but it's clinically treated as if it's T1. I've seen from other comments on this forum that there are mixed views about the DAFNE course but our take is to give anything a go that might be helpful even if some of it should be looked at with a critical eye. We did find Think Like a Pancreas incredibly useful and it threw a light on what had been some puzzling BG ups and downs. I've also wandered through this forum which has been very informative as well.

As I said in an earlier response on this thread, he is managing pretty well with the physical side of things. His target range is 4 to 10, and he has been told to aim for 50% TIR. This must seem very relaxed to a lot of you but it's because of his age and the cancer prognosis. He averages between 9 and 10 and TIR is +60%, most recent HBa1C in September was 62. Again, this might seem high but we have been told that it's fine as, to be blunt, he is unlikely to live long enough to develop complications and his quality of life is therefore really important. It's more the faff of having the diabetes to think about all the time although it is getting easier.

 

[mbmep]

Yes I totally understand as I had (have) two incurable conditions develop at 54 and developed a second cancer as the result of immune dysregulation. The problem is trying to find linked understanding between medical disciplines and my experience suggests there’s scant understanding of the newer cancer meds, especially more targeted therapies with specialities outside of the cancer. Never the twain shall meet! I ended up in hospital with cardiac issues brought on as the result of cytotoxic cancer meds (with a known cardio toxicity profile) and the staff there described my treatment as ‘the meds they couldn’t spell’. Hardly then to be much understanding of negative interactions.

Let’s hope the new endo has had more exposure and experience of the issue. I‘ve had to learn about my cancer to molecular level and advocate hard, educating along the way. I’m sure you’ll be doing the same on behalf of your husband 😉. Good luck!

The medics do seem to operate in silos don't they! So sorry to hear of all your complications - it's a b****r and you feel like you are playing a giant game of whack-a-mole so all the best.

 

[everydayupsanddowns]

I've also wandered through this forum which has been very informative as well.

Glad you’ve found some of the older forum threads useful. Even if just in knowing you aren’t alone in his diabetes behaving like a petulant and irrational toddler at times!

There was a thread of ‘tips we would give ourselves at diagnosis if we could go back in time’ which has some good ideas in it I think

5 Top Tips for Better Diabetesing

Just found myself absently wondering what I would say to myself if I could go back in time ‘Bill and Ted’ style and offer newly-diagnosed-me some hints and tips for better diabetes management, and a better relationship with my diabetes from future-me. What 5 hints and tips I might offer myself...

forum.diabetes.org.uk

 

[Proud to be erratic]

Thanks for the list and for your interest. I'm not sure if it would be 3g or 3e but it's clinically treated as if it's T1.

Yes, I did wonder about which T3 sub-category.
The challenge is, from a dispassionate viewpoint, T3x MAY or MAY NOT be considered as if T1 and that depends on an individual professional's opinion. There are certainly members of this forum who have a T3x diagnosis but are on oral meds only and thus seem to be as if T2 IF they have an Endo who is prepared to "own" their care, they get great support - regardless of whether they are as if T1 or T2. In one way your husband is being treated as if T1 for the most part: insulin and MDI plus the necessary test meters and strips; CGM (still very hard to get if T2).

The huge difference as I see it is having more than one co-morbidity which first of all brought about D and then can continuously affect one's D, often in contradiction to the needs of one's D. My first 2 Endos were not only in their own narrow silos, but were less than competent; they wrote reports recording my status and ongoing problems fairly accurately; but did nothing to help and offered no advice - despite the 2nd one promising actions that didn't happen.

I was fortunate - my Surgical team were still monitoring me and called me in for a final review before signing me off. They realised I was still, after 20 months, in deep trouble with my BG management and internally referred me to the Head of Endo in their Hospital [surgery in Oxford, but I lived in Bucks; Oncology overseen by Oxford but done in Bucks; dietician in Bucks but knew nothing about having no pancreas and me 100% dependent on Creon for digestion; gastroenterologist in Bucks, but fallen asleep until prodded by Oxford; Urologist in Bucks but also temporarily asleep; GP in Bucks but locked down and barricaded behind receptionists and bloodhounds - unwilling to engage with me even to share data between Bucks and Oxford]. The logjam got more-or-less unblocked by Oxford Surgical and Endo working together to help me. Very recently I have asked that Oxford look aftrr me for an emerging Cardio problem, to try and retain continuity. Hence I was fortunate - plus once I knew which buttons to push and had got names and email addresses of the half-dozen Consultants I was under, I cross-copied reports and test results between Bucks and Oxford direct to Secretaries asking them to acknowledge receipt and to confirm the data was now on their records. NHS Trusts don't trust! Data is not shared between Oxford and Bucks - there's a firewall preventing data sharing (you couldn't make these things up!).

Apologies, I'm digressing big time

I've seen from other comments on this forum that there are mixed views about the DAFNE course but our take is to give anything a go that might be helpful even if some of it should be looked at with a critical eye.

The stumbling block is, for you, the DAFNE course entitlement. Personally I think your Endo is living in a cocoon - but also, personally, I would encourage you to not waste too much energy on getting that DAFNE decision overturned. I think there are better things to follow up on. If your husband were to have my instructor you'd find a greater sense of despair about the unwillingness to engage with a diagnosis that is not just T1. I was formally discharged with a diagnosis of T1 - even though I clearly don't have the autoimmune conditions that define T1. Even so, in the eyes of the DSN leading the course, I was different and my needs for explanation about how to manage my D in a better way were out of the syllabus so weren't readily addressed.

Also there was only one course scheduled in 2022 in my region and I think only 2 in 2023. The availability of trainers is the problem, particularly DSNs pre-qualified for DAFNE instructing. You might find it helpful to establish whether a course even exists in your geographic zone or a neighbouring Integrated Care System (ICS). You might be chasing a course that doesn't exist locally.

I wish I could send you a digital link to the course synopsis, you might conclude there wasn't enough in that syllabus - apart from the interaction with others in insulin dependency. I'd hoped to have my own digital copy so I could look back easily and that seems to be a secret that DAFNE don't want to share electronically. My A4 tome is in storage, we moved earlier this year and most of our belongings are still in storage - but that in itself tells you that the text is of limited value. I can (and do) get a better answer to anything that crops up from asking this forum.

We did find Think Like a Pancreas incredibly useful and it threw a light on what had been some puzzling BG ups and downs. I've also wandered through this forum which has been very informative as well.

Both "Think Like a Pancreas" and this Forum are great sources of info. I'm wary about sources outside of UK, not because it might be wrong - but there are significant differences and those differences don't necessarily blend neatly with our NHS guidance. This is not because our "stuff" is better. It is because there are many, many different ways of interpreting and thus managing one's D. Different viewpoints on the use of mixed insulins vs MDI; different views on the importance of different carbs (indeed DAFNE pushes a different process of carb counting, which has its own confusion factors!) (and to follow the course you need to adopt their system; 12 months on I've pretty well reverted to what I previously knew).

BG ups and downs are still periodic curved balls for me 4 years in. Had one a couple of nights ago. There are just so many factors affecting everyone's BG that come out to play when diabetes is around. Have you found the "42 factors" compiled by Adam Brown in the journal Diatribe?

As I said in an earlier response on this thread, he is managing pretty well with the physical side of things. His target range is 4 to 10, and he has been told to aim for 50% TIR. This must seem very relaxed to a lot of you but it's because of his age and the cancer prognosis. He averages between 9 and 10 and TIR is +60%, most recent HBa1C in September was 62. Again, this might seem high but we have been told that it's fine as, to be blunt, he is unlikely to live long enough to develop complications and his quality of life is therefore really important.

ABSOLUTELY. I don't have any sort of terminal diagnosis, but know that my mortality is real and it will probably be my heart or returning cancer that will feature first. 60% is great as far as I'm concerned; the main thing is trying where reasonable to reduce the turbulence.

It's more the faff of having the diabetes to think about all the time although it is getting easier.

Diabetes is unquestionably a faff. Gary Scheiner is right when he describes it as Complicated, Confusing and Complex. I use my CGM as a major aid: my settings are not Alarms but at levels to be Alerts. My low default is anything from 6.5 to 5.5 [I have Dexcom G7 which allows the higher setting; Libre (stupidly) caps the low to 5.6]. I want to know when I'm falling, not when I've fallen. Hypos are now extremely rare - I consider it a matter of pride that I can intercept a low before I get hypo. Once that low alert has been triggered I monitor a bit more closely - firstly reset the low alert to c.5.0 and maybe have a milky coffee and a biscuit as an interim snack, without insulin. Continue to monitor - if 5.0 is triggered probably another small snack, without insulin. Increasingly I hear the alert and see my response on my graph.

My D is considered as very brittle, thanks to no pancreas and none of the associated hormones and enzymes. I can (and do) fall from 10 to 4 very quickly - interception is essential. At those times I may or may not know what I have done to cause this; since the fall can be so rapid I no longer care why - I just need to get my response right. The time to analyse why is not then. I always have a selection of response foods handy; a selection partly to achieve rapid pre-hypo response with things like Orange juice, jelly babies and dextrose - as opposed to slower GI foods such as a biscuit, or a small pear/plum or a fancy cookie. But a selection also just because I get variety and reduce the mental pressure of the faff! I have numerous types of cereal and energy bars in my "response box", along with 5 or 6 different ones in my travel pouch that goes in my travel "man bag" with my insulin etc.

My high is set at 13 for an Alert and even then I tend to take note rather than immediately try to do something I f that sustains then I'll take a bolus correction.

My various ailments probably are no longer as pressing as my D - although that is debatable now from the emerging side effects from a much needed prostatectomy. But unquestionably managing my D is totally at the top of whatever I'm doing or thinking. At a recent Endo Consult the Registrar turned to my wife and told her that if I might seem distracted by my D or it seems a constant interference in our lives that is because it is: I'm making an average of 305 decisions every day of the year about diabetes matters; each decision might seem minor but each wrong decision cascades into the next decision point. Hence the constant faff and MY perception that's its important to bother with it. Getting the balance right between enjoying life and managing my D is challenging.

 

[mbmep]

Amen to all of that! We have decided that the endo really hasn't any idea what she is talking about. Noted re the usefulness of the DAFNE course. It's the principle as much as anything. But what with endless medical appointments for everything else, you are no doubt correct that it's a waste of energy fighting for it. Thanks for taking the time to write such a detailed reply too.

 

[mbmep]

Amen to all of that! We have decided that the endo really hasn't any idea what she is talking about. Noted re the usefulness of the DAFNE course. It's the principle as much as anything. But what with endless medical appointments for everything else, you are no doubt correct that it's a waste of energy fighting for it. Thanks for taking the time to write such a detailed reply too.

Also to add that it was the DSNs at the hospital he was in following the DKA that got him setup with the Libre and the basal/bolus regime. The endo he saw on the ward was totally useless (even worse than the current consultant). When we asked about diet as at that point we were almost totally in the dark, he said limit yourself to 1400 CALORIES a day. Given he had lost weight due to the cancer and was getting specialist advice from the dietician about that, then lost even more due to the DKA - well, words fail you. It has seriously dented my faith in the medical profession and endos in particular.

 

[trophywench]

I reckon the main thing is not to concern yourself overmuch with 'controlling' blood glucose because it just is much more luck than judgement - cos after all, every one of those 42 things that can affect it can never ever all happen on the same day!

Hence - never seek to control it, because you're 100% onto a loser there - and instead try to manage it as best you can. OK - try to learn from any mistakes you made yesterday or whenever and seek to avoid doing whatever again - but don't let the regret from that overwhelm you - just draw a thick black line under it - and move on!

I reckon you've had really sensible advice about 'Time in Range' and HbA1c anyway. (So is that from the same consultant who won't allow him to attend DAFNE - in which case do you think said doctor might think/know much the same as Roland ie that it's unlikely to be of great use because of its syllabus being restricted?)

 

[mbmep]

I reckon the main thing is not to concern yourself overmuch with 'controlling' blood glucose because it just is much more luck than judgement - cos after all, every one of those 42 things that can affect it can never ever all happen on the same day!

Hence - never seek to control it, because you're 100% onto a loser there - and instead try to manage it as best you can. OK - try to learn from any mistakes you made yesterday or whenever and seek to avoid doing whatever again - but don't let the regret from that overwhelm you - just draw a thick black line under it - and move on!

I reckon you've had really sensible advice about 'Time in Range' and HbA1c anyway. (So is that from the same consultant who won't allow him to attend DAFNE - in which case do you think said doctor might think/know much the same as Roland ie that it's unlikely to be of great use because of its syllabus being restricted?)

The TIR and HBA1C advice was from his diabetes nurse at the GP surgery who is excellent, plus his oncology consultant who has prior experience of IID. The endo consultant has just confirmed that this was correct. It was the practice nurse who said she doubted whether he would be accepted on the DAFNE course so we were going to ask the consultant about it at the next appointment. But perhaps we won't bother now!

We know we can't get control, but are aiming for good management, because it just makes him feel better both physically and emotionally when he is, more or less, in range.

 

[Proud to be erratic]

Not a completely irrelevant question: how active is your husband and does that activity become affected on any one day by how he feels that day?

I ask, since I find that I can expend a decent amount of time on carb counting and converting that into a theoretical bolus dose but then need to apply an adjustment to reflect how active I think I'm going to be, or how active I've just been. That "adjustment " can range from a 70 % reduction down to as little as 15%. And that decision process is also carried over to tomorrow if I've been active today - but less reduction - and even into the day after tomorrow. There's plenty of good guestimating for the carb count; then a huge amount of guessing for the activity fudge factor.

Sometimes, when I wake I presume I'm going to be very active and reduce my breakfast bolus accordingly. Then events conspire and I'm far less active so I've seriously under-bolused and must address a high correction mid-morning, either with bolus or exercise. On other days the reverse occurs and I find myself going low repeatedly and small-snacking frequently, without bolus.

These 2 scenarios are sometimes referred to as chasing the insulin or sugar-surfing and there are books explaining this. But thanks to CGM these techniques can be successful in "steadying" one's BG sufficiently for the chasing or surfing to not feel stressful and become fairly routine.

I do tend to have a very repeatable breakfast, so I know with barely a thought what my food bolus should be and have already got the 70, 60, 50 etc % adjustments lying in my mind. My lunches are pretty simple and very optional, particularly if I am truly busy and my dinners extremely varied in type (low or high GI), volume of carbs and general complexity (salmon, spuds and peas or a sophisticated meal out). The complex meals often benefit from a 'split-bolus' strategy - some pre-bolus and then a 2nd post-bolus for which the dose size is assessed according to what I actually ate and how my CGM is telling me I'm doing. It's far from unusual for me to take a further bedtime correction of 2 or 3 units if my split bonuses were poorly guessed. Occasionally I over correct and my night low alert tells me when I'm c.6.0.

I strongly agree with Jenny's comment - whatever occurs draw a line and move on if something didn't work. You can't put the clock back.

Also, trust your CGM. Yes, they can sometimes be badly wrong; more often with Libre it was adrift, rather than wildly wrong, in terms of fp and screen figures. But I found the trend arrows were dependable and frankly it didn't matter if the displayed figure was a couple of points out, particularly once I set MY target to be in the 7s. I'm now fortunate to have the Dexcom G7 which allows me to calibrate the CGM to be extremely close to actual from a fp; the inbuilt algorithm of each CGM is trying to forecast actual from the data it has and thus display a number that has taken account of the natural lag between actual and interstitial. Libre, because there is no calibration capacity, is effectively blind to how it is really doing - which does add a further mental pressure (I see 5.5 but how close is that really? Am I at risk of actually being 3.5? Should I eat just in case? Etc, etc?).

There are unofficial apps that can be installed on one's phone which provide extra information, some include calibration. When I had Libre I used (and loved) the Diabox app on my android phone; but then Libre 2 was a flash CGM, ie one had to scan to get a reading. Diabox captured the signal from my sensor and displayed it onto my screen - even when my phone was asleep there would still be a date/time display PLUS the CGM reading.

I understand your remark about losing faith in certain medical professionals. I now need more than one hand to count how many times I've had seriously wrong and dangerous decisions. I'm lucky enough to have been able to stay abreast of my circumstances, even when in Hospital and coming out of an anaesthetic. I will not ever, in the future; surrender my own MDI to a Ward. I most reluctantly allowed myself to be put on a sliding scale response system before a big bit of surgery and woke afterwards to hear my CGM alert in full Alarm mode for very low. I called a nurse who looked at the sliding scale, agreed I was very low , then looked at the written protocol from my charts for the action to be taken and read that when low I needed extra insulin. I refused, took some JBs and fell asleep. Great umbrage was taken! When I woke layer my protocol had retrospectively been manuscript amended and the Ward Dr was in denial that there had ever been a problem. Never again will I surrender my pens.