Immunotherapy induced diabestes

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I'm much with you on the surrendering control bit but unfortunately when you have an accident, break something and then need to have it pinned and plated/wired which rather obviously requires a GA, and it's not the same hospital where the diabetes dept know you well and so neither they nor you have any proof you only use 10 point summat units of Basal insulin a day and the sliding scale protocol apparently says an hourly rate of 2 units EEEEEK - it proves very difficult to persuade em different, on your own, with no third party presence to corroborate this, or mobile phone signal !
 
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.
Martin isn't hugely active but has found that if we plan to go out for a gentle walk (a couple of miles on the flat - we live on the Somerset Levels) or he wants to mow the lawn, then he should skip or dramatically reduce the bolus at the preceeding meal or he will invariably go low. He also finds a walk around the village of about a mile is good for reducing a high. Breakfast and lunch are fairly repeatable and always around 50 to 55gm of carb, and of the same sort of carb. Evening meal bit more varied. His alarm is set at 4.5 so he catches 90% of hypos before they happen. He doesn't bother with the high alarm as he looks at his readings frequently anyway and he doesn't tend to take correction doses outside of meal boluses. The diabetes nurse didn't seem keen on that but I think it was because of his/our lack of experience with the whole shebang but we are very much more confident now about what we are doing and more willing to experiment.

Your experience in hospital sounds very frightening. I won't even begin to go into the saga of what happened during the three visits in three days to A&E when he was building up to being admitted as an emergency with DKA. And it's interesting that you think your records were changed as we are sure the same thing happened.
 
Martin isn't hugely active but has found that if we plan to go out for a gentle walk (a couple of miles on the flat - we live on the Somerset Levels) or he wants to mow the lawn, then he should skip or dramatically reduce the bolus at the preceeding meal or he will invariably go low.
Thank you for widening our understanding of Martin's circumstance. That trial and learning is invaluable for all of us and it sounds as though he is getting the measure of his responses and bolus needs.
He also finds a walk around the village of about a mile is good for reducing a high.
Good. Some people find twice up and down the stairs is sufficient, I don't. That would tend to be perceived by my body as anaerobic exercise which produces an initial further high; in anaerobic state my body thinks I'm in fight or flight mode and releases extra glucose from the liver's store to help me fight! Then I've got more to deal with. So a steady walk or gentle stroll is ideal. It can still take a while to show as a reducing BG, but I've become quite confident that my walk will produce a good outcome and let my G7 tell me.
Breakfast and lunch are fairly repeatable and always around 50 to 55gm of carb, and of the same sort of carb. Evening meal bit more varied. His alarm is set at 4.5 so he catches 90% of hypos before they happen.
May I suggest try a higher setting, such as 5.6 with the blatant aspiration of no more hypos. Suggest he treats that Alarm as an Alert and adjusts his responses accordingly.
He doesn't bother with the high alarm as he looks at his readings frequently anyway
Fair enough. In effect I know when I'm drifting high and generally don't need that alert. But sometimes I am truly busy and distracted with niff-naff and trivia, so the high alert is a useful reminder when it occurs and then repeats 20 or 30 mins later, which G7 allows with its array of settings.

Incidentally there was nothing like this advice from my DAFNE course. Not just because CGM was not discussed but all the focus was on what (bolus or basal) to adjust and by how much before a meal. In between just ignore and do nothing, unless you've gone hypo then how to respond. I was tearing my hair out when she said we should expect to go hypo frequently - wanting to scream out WHY? Why hasn't your Libre already told you that a low is coming. But it wasn't in the syllabus! DAFNE (Dose Adjustment For Normal Eating) has a significant content about managing meals; rather less about managing daily living, in my opinion. CGM helps daily living.
and he doesn't tend to take correction doses outside of meal boluses. The diabetes nurse didn't seem keen on that but I think it was because of his/our lack of experience with the whole shebang but we are very much more confident now about what we are doing and more willing to experiment.
I used to take lots of small (tiny even) corrections but these days do this a lot less frequently. I certainly check as I'm going to sleep and will correct if I'm above 10 (for me = 2units at 1:2; apparently that is pretty aggressive and 1:3 was recommended as sufficient; but it works for me. Otherwise a couple of hours above 13 will trigger me to do something like a bolus, normally just a walk or mowing etc will be enough.

A small but perhaps useful passing observation: I find my body's natural resistance to insulin increases when I'm above 8 or certainly 9. So my bolus correction ratio has been established by trial and learning from already being somewhere above 10 and thus my natural resistance is already factored in. BUT if I eat when much above 8 then somehow my bolus is never quite sufficient. That resistance is preventing my bolus from doing its suff so efficiently and I used to never quite get the full correction anticipated - ie eat while high results in staying high. I have 2 different ways of managing this:

Wait until I'm at 8 and definitely falling, then eat as normal. This is my preferred way, but it irritates my better half hugely and I do understand that reaction. Sometimes the wait can be a couple of hours.​
If waiting is not a reasonable option I'll hold back on eating the full meal I've bolused for. Sometimes as simple as half the potatoes, or just not eat the planned desert. Then my BG will invariably fall eventually and I can then make a considered decision on whether to eat the uneaten bit later.​
I didn't learn that from DAFNE and was told I should never inconvenience myself in such a way. I was told I should increase my correction bolus as the right solution; but by how much, I asked? Trial and error was the reply. But doesn't this mean my correction ratio is fundamentally flawed, I asked? A blank look was the answer and I was confused.
Your experience in hospital sounds very frightening. I won't even begin to go into the saga of what happened during the three visits in three days to A&E when he was building up to being admitted as an emergency with DKA. And it's interesting that you think your records were changed as we are sure the same thing happened.
I know for certain my records were changed and I showed the alteration to another youngish Surgical Dr who I trusted and had been saying the protocol couldn't be wrong because it was a tried and tested process. Then she went silent when she saw the original text now manually amended. I regret not taking a photo.
 
1. 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!

2. 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!

3. 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?)
1 Agreed, 2 agreed and 3 highly likely the Endo could have been aware that DAFNE might not be so much help. But still in a cocoon - why not explain that if that was the logic?
 
1 Agreed, 2 agreed and 3 highly likely the Endo could have been aware that DAFNE might not be so much help. But still in a cocoon - why not explain that if that was the logic?
See previous reply somewhere above - it was the diabetes nurse at the GP surgery who didn't think Martin would be eligible. The endo in the one appointment we have had didn't mention it.
 
See previous reply somewhere above - it was the diabetes nurse at the GP surgery who didn't think Martin would be eligible. The endo in the one appointment we have had didn't mention it.
Thanks for correcting. I like "the somewhere above" concept, after a while a longish thread becomes a shade tortuous. I have now read back and acknowledge that you felt the Surgery Nurse is a Star. However I should now adjust my take on the possibility of a DAFNE Course - because I'd wrongly understood that the original advice had come from the Hospital.

I'm hesitant about whether I should post the rest of this, which I drafted yesterday eve. There's a real possibility of pushing too much info towards you and creating unwanted overload.

Frequently newcomers to this forum, particularly those who have been or are in the throws of T1 diagnosis, talk about something that they've been told by their GP Surgery Nurse, who has the lead for the Surgery on diabetes matters. These nurses can come across as both knowledgeable and authoritative on anything to do with Diabetes - when that is not necessarily the case. In accordance with NICE Guidance GP Surgeries are responsible for the diagnosis and management of T2s, some 90% of the total UK diabetic population. But T1s (the other nominal 10%) come under Specialist Teams, usually Hospital based, as directed by NICE Guidance. It follows that Surgery Nurses may well be great for most T2s but will not usually be appropriate for T1s, or us secondary "odd bods" (a fraction of 1%). They will only have very limited experience with any insulin dependency and certainly don't routinely encounter CGM (although that is changing a little right now). A GP Surgery 'Diabetes' Nurse also may have the lead for Diabetes within the Practice, but that could be a relatively small part of their total workload. In Feb 2021 my former GP Surgery Diabetes Nurse had never seen a Libre sensor, never mind seen the data available from my phone's LibreView app. She'd also never heard of T3c - but that's understandable.

There is a great deal of difference in the treatment path for T2s than for T1s and General Practice Nurses or Doctors are simply not normally familiar with T1 needs. This perhaps is why it is so important that some T3s need a diagnosis of "as if T1", then they should automatically come under Hospital Specialist Teams. That might make them "as if T1" in writing - but that's not a guaranteed consequence for all treatments that a T1 might be eligible for. Recent changes (mid 2022) in the NICE Guidance for both T1s and T2s (NG17 & NG28 respectively) did provide one major change, which allowed GPs to prescribe CGM in their own right; previously they could only write the prescription if requested by a Consultant. This makes sense, allowing GPs to use their medical judgement; and it could, in the future, bring GPs a bit closer to insulin dependent diabetes; but that's my conjecture. Meanwhile currently most GP Surgeries aren't appropriate places for help with insulin dependency.

There is relatively little NICE Guidance for any shades of T3, sometimes known as Secondary Diabetes, that I can find. A Google search against NICE Guidance & 'T3anything' recovered an association with T3c and NG 104 - which is for Pancreatitis and so the Google association doesn't help. We seem to be on our own with this secondary diabetes - unless lucky enough to end up with Consultants who understand.

The bottom line of all of this is that DAFNE courses are sponsored by Hospital Trusts or by Integrated Care Systems (for Hospital Trusts). Course bids come from Specialist Teams, not from GP Surgery Nurses and it could be that your Nurse was possibly not correct in her assumption that Martin would not be eligible! It will need a Hospital Specialist to confirm this.

If DAFNE still remains something Martin thinks might help, can he reach back to the Specialist Nurse who set him up with Libre? Meanwhile I really hope that your request to get your Endo support from the big County Hospital proceeds; that just makes more sense. I'm so glad that I have got my Endo, Onc'y and now Cardio all at the same place - even though the hospital is now some 35 miles away. It helps just knowing how the Hospital works for parking, restaurants & admin etc - never mind knowing that all the HCPs can see my full medical info.
 
Thanks for correcting. I like "the somewhere above" concept, after a while a longish thread becomes a shade tortuous. I have now read back and acknowledge that you felt the Surgery Nurse is a Star. However I should now adjust my take on the possibility of a DAFNE Course - because I'd wrongly understood that the original advice had come from the Hospital.

I'm hesitant about whether I should post the rest of this, which I drafted yesterday eve. There's a real possibility of pushing too much info towards you and creating unwanted overload.

Frequently newcomers to this forum, particularly those who have been or are in the throws of T1 diagnosis, talk about something that they've been told by their GP Surgery Nurse, who has the lead for the Surgery on diabetes matters. These nurses can come across as both knowledgeable and authoritative on anything to do with Diabetes - when that is not necessarily the case. In accordance with NICE Guidance GP Surgeries are responsible for the diagnosis and management of T2s, some 90% of the total UK diabetic population. But T1s (the other nominal 10%) come under Specialist Teams, usually Hospital based, as directed by NICE Guidance. It follows that Surgery Nurses may well be great for most T2s but will not usually be appropriate for T1s, or us secondary "odd bods" (a fraction of 1%). They will only have very limited experience with any insulin dependency and certainly don't routinely encounter CGM (although that is changing a little right now). A GP Surgery 'Diabetes' Nurse also may have the lead for Diabetes within the Practice, but that could be a relatively small part of their total workload. In Feb 2021 my former GP Surgery Diabetes Nurse had never seen a Libre sensor, never mind seen the data available from my phone's LibreView app. She'd also never heard of T3c - but that's understandable.

There is a great deal of difference in the treatment path for T2s than for T1s and General Practice Nurses or Doctors are simply not normally familiar with T1 needs. This perhaps is why it is so important that some T3s need a diagnosis of "as if T1", then they should automatically come under Hospital Specialist Teams. That might make them "as if T1" in writing - but that's not a guaranteed consequence for all treatments that a T1 might be eligible for. Recent changes (mid 2022) in the NICE Guidance for both T1s and T2s (NG17 & NG28 respectively) did provide one major change, which allowed GPs to prescribe CGM in their own right; previously they could only write the prescription if requested by a Consultant. This makes sense, allowing GPs to use their medical judgement; and it could, in the future, bring GPs a bit closer to insulin dependent diabetes; but that's my conjecture. Meanwhile currently most GP Surgeries aren't appropriate places for help with insulin dependency.

There is relatively little NICE Guidance for any shades of T3, sometimes known as Secondary Diabetes, that I can find. A Google search against NICE Guidance & 'T3anything' recovered an association with T3c and NG 104 - which is for Pancreatitis and so the Google association doesn't help. We seem to be on our own with this secondary diabetes - unless lucky enough to end up with Consultants who understand.

The bottom line of all of this is that DAFNE courses are sponsored by Hospital Trusts or by Integrated Care Systems (for Hospital Trusts). Course bids come from Specialist Teams, not from GP Surgery Nurses and it could be that your Nurse was possibly not correct in her assumption that Martin would not be eligible! It will need a Hospital Specialist to confirm this.

If DAFNE still remains something Martin thinks might help, can he reach back to the Specialist Nurse who set him up with Libre? Meanwhile I really hope that your request to get your Endo support from the big County Hospital proceeds; that just makes more sense. I'm so glad that I have got my Endo, Onc'y and now Cardio all at the same place - even though the hospital is now some 35 miles away. It helps just knowing how the Hospital works for parking, restaurants & admin etc - never mind knowing that all the HCPs can see my full medical info.
Thanks for that. All I can say is that apart from one visit to see the useless endo in October, there has been no contact from the hospital diabetes team following Martin's discharge from hospital post DKA which was in May. The nurse we see at the surgery is part of an outreach team that covers several surgeries and has worked with T1 and T2 including on diabetes wards in the past. Perhaps things are organised differently in Somerset!
 
Thanks for that. All I can say is that apart from one visit to see the useless endo in October, there has been no contact from the hospital diabetes team following Martin's discharge from hospital post DKA which was in May. The nurse we see at the surgery is part of an outreach team that covers several surgeries and has worked with T1 and T2 including on diabetes wards in the past. Perhaps things are organised differently in Somerset!
You are very likely right. I recall reading that some outlying communities in England get DSN support from visiting Nurses to GP Surgeries.

I find my own geographic system from the "new" (been setting itself up since 2019, went live 1 Jun '22) Integrated Care System (ICS) for Bucks, Oxon and Berks (BOB) is still a fragmented collection of Trusts and Surgeries each doing their own thing, directed by now defunct CCGs that have been theoretically absorbed into the ICS. Previous references by you to selected HCPs in 'silos' and the pastime of 'whack-a-mole' were very appropriate. I've had to learn so much about how the NHS (doesn't, but should) work over the last 4+ years and I continue to be amazed that I know and can remember anything about my diabetes escapades and excursions!

I know I'm lucky to not only still be alive but enjoying a broadly acceptable quality of life - thanks to timely surgery. But I can't help being resentful about how difficult the medical admin has made the process and how poor sometimes the clinical process has been, creating totally unnecessary stress and confusion.
 
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