Hello

[Proud to be erratic]

Thanks so much for this kindness Roland.

Im doing fine thank you. I was admitted as I had another acute pancreatitis episode but it was complicated due to my diabetes which had caused a kidney infection! Just a few days hospitalised and sent home when stable, armed with meds.

Sorry to hear this. You've reinforced my perception that pancreatitis can keep coming along to pester and can be pretty nasty at times. You've also made me realise that I don't really know which specialist deals with pancreatitis - are you under a Gastroenterologist? Presumably you will remain under the watch of that specialist for the foreseeable future. I had a semi-open door to return through to my Upper GI team, without needing a GP referral and once got to Upper GI very quickly from A&E. Quoting a Consultant name was a bit of a magic ticket.

I’ve been lucky in only needing “single incision surgery” so far. I’ve not had the complications (or horrors) you’ve had to endure. So I’m grateful and sanguine but I’m beginning to see why so many talk about mental health being important.

Probably to be fair mental health is important more or less regardless of specific ailments. Its just that when we don't need help (or don't recognise that we need .... ) the idea slips by.

I imaged my retired sixties would be spent with a bottle of fine red wine at my elbow, and beef wellington inside me and large custard & spotted dick pudding awaiting the same fate.

And so it still can be. But I simply can no longer digest a rare steak, but I love the suety (meaty) pastry from Beef Wellington and I'm sure could get the beef or veal cooked appropriately; the fine red wine is easy and I love spotted dick pudding. I'll give the custard a miss, put off that by boarding school, but fresh clotted or brandy cream is a fair substitute!

I didn’t think I’d need to inject myself, take pills and “evaluate” everything before I eat. I guess I’m beginning the process of mourning the loss of my previous healthy life - it was only 12 months ago that I was perfectly well.

But yes, the loss of spontaneity etc is a bore. I do find there is a surprising degree of compensation (if that word is appropriate?) just from discussions on this forum when we periodically bemoan these things and somehow it's a bit better for the sharing and general knowledge that other's here also "get it".

I do wonder how people keep positive, especially when they’ve had hardships in their treatment and care?

We do meet some people on this forum where you read the tale of woe and think "how do they manage". Its certainly not always fair. I admit I find this question more easily dealt with by keeping it a rhetorical one! I'm blessed with family, friends and for the last 2 years a lot of support from this forum. I also thrive on just having some knowledge ... from which comes wider questions and more knowledge ..... and the knowledge helps me manage the fear and disruption.

Do your bouts of pancreatitis have a frequency or pattern? Is there an end game other than watch and wait?

I didn't know that there were specific possible links between diabetes and kidney infections

but it was complicated due to my diabetes which had caused a kidney infection!

- shows how little I still know and understand. [In retrospect was that the other way round - the infection had worsened your D management?] Of course so many of these things are inevitably intertwined and any illness, particularly a kidney infection, can elevate BGs making D management unduly challenging. Did you glean some coping strategies from this experience or did it all rush by you as you did that juggling trick of managing D in competition with coping with pancreatitis while negotiating a route out of A&E?

Anyway, hopefully you now have a date very soon for your first Endo Consult and general review. My experience with those events were a bit mixed. I met my 1st DSN the day after my discharge from Hospital when I was on fixed insulin doses, no CGM and just finger pricking. She corresponded fortnightly, tweaking my doses from analysis of my hand written log books. My first Endo was a phone consult (during Covid) and hadn't even read my notes before we 1st spoke; I was able to get moved to another Endo who promised lots and 6 months later had done nothing. Luckily I was taken on by a different Trust in a different County and now get brilliant personal support; due to see him next in early Sep. We've just moved house and fortuitously we remain under the same Integrated Care System, so shouldn't need to move Consultants. Am I correct in thinking you are London based - so presumably come under one of the large London Hospitals. Hopefully for all your needs. Do ask questions as and when they arise.

 

[JohnC2001]

Thanks again Roland. Yes the pancreatitis can be vicious and it comes and goes of its own volition. I’m my case it’s idiopathic so its habits are unpredictable and its causes unknown. So even eating and living with great care can’t prevent attacks and complications. All I know for sure is the pancreas is atrophying, thus my newly acquired diabetes. No doubt more maladies await me as it continues to decay.

I’ve been told that due to the high BG levels my body became susceptible to infection and high BG damages the kidneys, thus the infection. I assume everyone here suffers the same risk/ has had similar issues?

Sadly pancreatitis means I’m never allowed alcohol again and very little fats in my diet. So definitely no wine or beef wellington for me!

Ive been treated by the liver, pancreas and biliary team, all of which is upper GI isn’t it so I suppose they’re all gastroenterologists? I admit I don’t know their discipline titles.

I’ve been so lucky with my care, the speed, efficiency and quality of care I’ve had has been second to none. When I hear what you’ve been through it makes me gulp to think “they’re but by the grace of God…”. It’s amazing the NHS works at all after the damage done these last 12 years. I’m so sorry you’re one of those whose care has suffered. I hope and trust things have improved over time.

 

[Wendal]

Morning John so sorry to hear you have had another Pancreatitis attack and hope you are in recovery mode.I do follow your story closely as think we have some parallels though as we know each individual is unique and will respond/ react differently.
Like you after my attack I was told not to drink alcohol which I have not done for last 18 months. My main issue was not giving up the alcohol although a cold beer on a summers evening was very enjoyable, but the social aspect of maybe not fully enjoying nights out with friends etc.
However,I had adapted to this and apart from the odd works meeting where everyone else is having a lot to drink where you can feel slightly left out it has not proved to be a barrier to enjoyment.
Now just over 2 weeks into my Diabetes journey there is another period of adaption related to the diet aspect of social enjoyment.Hopefully once my insulin levels are to an extent “established” and then left to myself to fine tune as appropriate then I can enjoy a wider range on non low carb options but all in good time.
I have always found for me to move on it is best to concentrate on what I can do rather than reminisce about what I can’t do anymore and that helps me to better accept anything that comes my way but obviously you have good days and challenging days when things do not go according to plan.
Am coping with daily regime of insulin therapy and CGM and my excellent local support has continued, eye exam was fine and in fact my vision has actually got better which seems odd.
The first few days my BG levels were all above 15 -22 but last 7 days am hitting 70% TIR so definite progress and apart from quite sudden drops in BG ( so have raised my alarm from 4.9 to 5.5) often about mid morning when I have started having a biscuit of the trend is down.
Generally have being doing little exercise apart from walking during this initial period but on Sunday one of our cats died peacefully in the night ( she had been unwell a long while with CKD/Hypertension ) and I spent a vigorous 10-15 minutes digging a spot in the garden to bury her and my BG alarm went off soon afterwards.
Anyway thought I would check in and hope all going well for everyone else.

 

[JohnC2001]

Morning Wendal. Thanks for this note. Yes, it does sound like we’re on a very similar path. Like you I’m ok without alcohol as I wasn’t a heavy drinker before but likewise I do miss a cold beer on a summer day.

I tried a 0.0% beer but the taste of beer made me recoil; it seems my body has decided that the taste of beer means agony! So I’m happy with my ginger cordials.

I’ve been told the struggle I will have with type 3c diabetes is the fluctuating levels of pancreatic functioning alongside the effects of absent glucagon. Just what this means I can’t say but I’ll let you know when or if I find out.

I’m retired so I didn’t have work events to negotiate just dog walks. Once these were long and ended with a pie and a pint so we will see how they look when the future takes its shape.

Do share your progress if you’re able as it’s a great comfort to hear how others cope and negotiate the world with these conditions.
By the way, what does 70% TIR mean?

All good wishes

 

[Wendal]

Hi John and thanks for feedback.
TIR is Time in Range so between 3.9 to 10 and a good indicator of how you are managing your Blood Glucose levels.
Was going to try the alcohol free beers but don’t think they are good for diabetics or soda based so must find myself an alcohol free low carbo alternative.
You are right about Type 3c being more brittle due to not knowing how much your pancreas may or may not be producing but think it is the lack of Glucagon ( basically works in opposite way to insulin so normally kicks in to control falling BG levels ( all to do with sending messages to Liver to produce glycogen as I understand it but sure more knowledgable guys can explain it better).
The lack of Glucagon is to me more of a issue in that my quickly falling BG seems more unpredictable than any rising BG and am more worried about avoiding a hypo than the hyper side.
That is why I revised my alarm upward to try and ensure I take early action as I have noticed that the Libre does not always work when BG is falling quickly and I have had the scan again in 10 minutes when my 4.9 alarm was triggered and I am very keen to get an accurate reading but will now just have a biscuit as soon as I feel it dropping

 

[JohnC2001]

Yes I too have set my alarm at 4.9, a level where I can watch and intervene early if needed. Likewise I haven’t been too worried about going high but that’s changed of late. A contributing factor to my hospital stay was a kidney infection which Ive been told was a direct consequence of high BG levels. It seems sugar is corrosive to the kidneys. On top of that I’ve been getting painful pins & needles in my feet and hands which has also been attributed to high BG levels. So now I’m just as wary of going high as low and being hit by the crashing effects of a sudden drop.

I have been using an app called sweat dreams that allows me to see my current BG levels and trend on my Apple Watch - I assume /think there’s lots of the apps around. It has 2 hi and lo alarms so with the easy access to my trend and with alarms going off (sometimes too often) I’m fast improving my BG management. It’s funny but just being able to quickly see where I am rather than checking my phone seems to help more than I thought.

I now carry fruit pastilles with me. I’ve not got much of a sweet tooth but these have their glucose levels on the pack so I know 7 pastilles is 16g of glucose. I think I might start carrying a biscuit though, that sounds better…

 

[trophywench]

Brain detects BG low so tells pancreas to send out Glucagon to liver.

Liver receives Glucagon message and responds by sending out Glycogen into the blood stream to increase the BG.

Liver is not what you'd call poor at multi tasking. It simply cannot do it whatsoever. So, if it's processing alcohol from the blood, it simply cannot receive any other message or act on it, so it can't increase the person's BG - so the person must do that himself!!!

( An aside - The Almighty, generally, created an extremely complex organism in the human body which I've always been glad of. BUT I have to now admit it's disappointing to discover this late on that us females of the species really have the same liver capability as the male ! )

And - exceptionally infuriating for @JohnC2001 to not only find no Beef Welligog, nor a decent red to wash it down with - but absolutely no ideal accompanying to my mind Pommes Dauphinois either. How very insulting.

 

[trophywench]

Never mind, eh - long gone are the times I could afford to buy a whole fillet of beef to make one for a dinner party!

 

[rebrascora]

I now carry fruit pastilles with me. I’ve not got much of a sweet tooth but these have their glucose levels on the pack so I know 7 pastilles is 16g of glucose. I think I might start carrying a biscuit though, that sounds better…

Just to clarify.... a biscuit would be useful to head off a low but it is really important to have quick acting hypo treatment always to hand in case of a full hypo, as a biscuit (which contains fat), will be slower to release it's glucose. By all means carry a biscuit or two as well, but always, always keep your fruit pastilles or Jelly Babies or whatever your chosen hypo treatment is, with you. The technology is great for giving early warning of impending hypos but it can fail or levels drop so quickly that you are hypo before you are able to head it off with a biscuit, so having proper hypo treatments is the essential thing. A biscuit is good for stabilizing levels after a hypo treatment although I can never get away with them as my levels would go into orbit or preventing a hypo, but you can use a couple of pastilles or a JB to head one off as well. I find JBs best because 1 JB is near enough 5g carbs, so I can easily calculate that 1 JB will raise my levels by 1.5mmol and 2JBs (10g carbs) by 3mmols. For slower acting carbs I use dried fruit like dates, figs, prunes and apricots. One prune or apricot is about 5g carbs and a date or fig about 8g carbs. They are not suitable for hypo treatment because the fibre in the fruit can slow the release of their fructose (like the fat does in biscuits) but can be used instead of a biscuit as a more health conscious option if you consider such things.

 

[Wendal]

Hi Barbara,
Absolutely agree with your point about always carrying your fast acting sugars ( Pastilles and Dextrose for me) at all times and around the house etc.
I simply take the biscuit literally to as you say head off the low and usually about 5.5/6 if in downward direction.
If drops into 4s or very fast etc then I will hit the sugar. The biscuit is more about having a mid morning “ something” just to stabilise what seems a regular fall mid morning.

 

[Wendal]

PS John appreciate your comments about hypo and hyper risks but personally much happier about straying into orange zone for a short while rather than going below 4.
Happy for any other views though.

 

[JohnC2001]

ideal accompanying to my mind Pommes Dauphinois either. How very insulting.

hmmm… dauphinois. Full fat cream and tons of garlic too. Heaven.

 

[rebrascora]

PS John appreciate your comments about hypo and hyper risks but personally much happier about straying into orange zone for a short while rather than going below 4.
Happy for any other views though.

I think that is wise and in accordance with CGM TIR guidance but like everything diabetes related, it can be quite individual. I personally find that once my levels get above 10 they get stuck for many hours and take a lot more insulin to come down than I would expect and I end up stacking corrections which means several more injections and a lot of frustration which may or may not lead me to inject more insulin than I really do need ie. a rage bolus, in order to bring me down which can then lead to a nasty hypo, whereas the relatively mild hypos that I have more or less daily, are very easily fixed and I get to eat a JB or 2 rather than stick needles in myself and respond in 15 mins rather than hours. I do however have to factor in that going below 4 so frequently can impact my hypo awareness but so far no problems with that. That said, my low carb diet ensures that I am never too far out with my carb counting but that protein release can cause very stubborn highs.... but that protein release can also buffer exercise. What I hate is that I feel like I am wadiung through treacle when my levels are above 10 and exercise becomes so much more difficult and I sleep fitfully. Conversely, last night I spent about 4 hours just below 4 according to Libre (which usually reads slightly low for me, and had the best nights sleep and woke up really refreshed and rested. It is not uncommon for non diabetic people to drop below 4 during their sleep and in many respects it is a natural part of the body's circadian rhythm to drop low between 1 and 3am. However as insulin dependent diabetics our hypo awareness is our safety net and therefore preserving it is important, so I will do my best to prevent that happening again by adjusting my basal insulin or upping my bedtime levels a bit but now that my body (and mind) no longer panic about those low 3.5-4 levels I sleep more soundly but I still get the subtle hypo warning signs about 4 when I am awake (sensory signs) and above 3 when I am asleep.

I know it is very different for Type 3cs if you don't have Glucagon production and some will have that and some won't but I never rely on glucagon to bring me up and it is a very rare occurrence that my levels come up without hypo treatment unless it it due to Dawn/ Phenomenon/Foot on the Floor syndrome... ie the circadian release of glucose by the liver to give us energy for the day ahead.

I am aware that my attitude to hypos is probably a little cavalier and I do regularly reassess both my attitude and my hypo awareness but what I like about my approach is that I no longer fear hypos, even nocturnal ones, I have gained an enormous amount of confidence from learning to manage them and those two things together with trying avoid the frustration of my levels getting above 10 and stubbornly not coming down again has improved my mental outlook and sleep and therefore general health. So for me I would rather have more hypos and less time above range, although 100% in range would obviously be the ideal, but not achievable in reality.

Just my thoughts on my situation, but I found fear and anxiety about hypos crippling. Developing confidence and skill in managing them has been liberating and empowering and the only way to do that has been to experience them and learn. I live on my own and I am generally very risk averse but I need confidence to manage my diabetes well and maintain my lifestyle. I didn't set out to deliberately have hypos but I had a week of nocturnal hypos about 8 months after diagnosis due to exercise. Some of those hypos despite reducing my evening Levemir down to zero and in a lot of respects it did me a favour in that I had to face my fear..... Up to that point I was waking regularly through the night worrying that I might be hypo and sometimes putting the light on and testing to reassure myself. Now I know my body will wake me if I need to deal with a low. Sometimes I will wake up hypo, chew a JB or 2 depending upon my reading and be back to sleep within 2 minutes..... I know I really should set an alarm and retest after 15 mins but my sleep is important too and I have learned that my body will wake me up again if I need to treat again. 4.5 years down the line, I average about 90% TIR, I adjust my Levemir doses very regularly to balance my liver output and exercise effects which for me are most impactful overnight but I still get almost daily hypos and sometimes more than 1 a day/night. Whilst I get signs like slightly blurry peripheral vision or a tingly nose, lips or tongue or a wooly headed feeling or a feeling of slight indigestion or going down in a lift, I very rarely get the sweats and shaking and debilitating hypo symptoms that I got with the first few I experienced and which I assume are caused by panic and adrenaline release. They are now mostly a very minor inconvenience, particularly if I need to drive somewhere, although I do get the odd one that makes me feel a bit rough with the shaking and sweating usually when levels have dropped rapidly.

That is my experience.

 

[Wendal]

Thanks for your very comprehensive reply Barbara and I fully understand your reasoning and once again it recognises that we all have individual journeys and we must identify what works best for us given our specific circumstances.
I am a complete newbie and will very likely change my views as I travel along my journey but at the moment if I go into the orange it is not too difficult for me to get back into the Green and have not as yet changed my normal Novorapid (2 units).So my main focus is currently on avoiding going too low rather than going high but again appreciate that experiencing the lows gives you that confidence to better deal with all eventualities.
Even in my very short journey I have imo improved my response to going low so first time had the pastles/bounty bar and cereal so “ overreacted” whereas the second time did the 15/15 and actually thought about how best to respond rather than my first time panic.
Anyway I am here to learn from experience of others who I am very grateful in their sharing if their experience.

 

[rebrascora]

Yes, totally agree that it is really important to find your own way and find what works for your body and the food you eat and the insulin you use and the activities you do etc.... So many variables and certainly in the early stages of using insulin it is important to be really cautious with it and be very wary of hypos, so you are totally right in your approach, particularly with your level of experience and likely some sporadic existing home insulin production.

I just wanted people to know that the fear of it can be more long lasting and debilitating than a hypo needs to be, once you get more confident at managing them as you are clearly finding. I remember my first few hypos and thinking I was going to die because I felt so dreadful and now I can just pop a couple of JBs in my mouth and carry on mucking out my horses or whatever else I was doing and it might be a little heavier work and I have to slow down a bit but still doable.

 

[Wendal]

Hi Barbara;
Hope your horses are OK and you mentioning Colic took me back many moons when I used to deal with horse wormers due to a particular parasite called Strongylus Vulgaris which migrated through the cranial mesenteric artery and induced the Colic.
Modern anthelmintics are very good at killing all the migratory stages so not a big threat today.
Anyway I digress.

 

[rebrascora]

Hi Barbara;
Hope your horses are OK and you mentioning Colic took me back many moons when I used to deal with horse wormers due to a particular parasite called Strongylus Vulgaris which migrated through the cranial mesenteric artery and induced the Colic.
Modern anthelmintics are very good at killing all the migratory stages so not a big threat today.
Anyway I digress.

You clearly know your stuff. Thankfully this isn't worm related but appreciate your input. Sadly migrating worms are still an issue even for well looked after animals with modern wormers. My farrier lost his foal last year to them after he had spent an absolute fortune on stud fees, foaling complications and rectifying a slight leg deformity an infection and then a dog attack, to say nothing of the emotional loss as it had had a lot of handling and love and attention over it's short life. Apparently conditions last summer were particularly beneficial to that species of worm flourishing and youngsters are vulnerable. I have regular faecal worm egg counts done on my lot and rarely get a positive result, but you can't be complacent.

 

[Wendal]

Morning Barbara,
Am afraid it was a long time ago and my knowledge is in desperate need of updating.
Mind you for those that like examples of irony a very relevant one personal to me was receiving my Diabetes phone call from my GP in the middle of me doing a Diabetes presentation.
Not a coincidence I welcomed at the time but can appreciate it with a wry smile now.
ATB