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Newbie with a dodgy pancreas

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

JhnBssll

New Member
Relationship to Diabetes
Type 3c
Hi all, I've had a quick browse and you all seem jolly helpful; I'm quite new to my latest diabetes diagnosis (2 days!) but I've had a few years to prepare for it 😛

Short version - 6.5 years ago I had acute necrotising pancreatitis which landed me in ICU for 11 days with multiple organ failure and required both a necrosectomy and cholecystectomy once I was well enough for surgery. I was in hospital for around 4 months in total, much of which I was on an insulin drip and taking supplementary enzymes. I was told after the necrosectomy that I had anywhere between 5% and 50% of living pancreas remaining but miraculously by the time I got home what was left of it had taken up the slack and I was able to return to a relatively normal diet. The only thing I stopped completely was alcohol as I was told this is the most common cause of pancreatitis next to the gall stones which had caused my original problem.

I had CT scans every 12 months or so for the first few years, and after that just annual blood tests. My glucose tolerance tests were always bad but my HbA1c was always normal. The prognosis was I was able to produce enough insulin overall but not able to produce it quickly enough to deal with spikes.

Fast forward to last week when I get a rather panicked call from my GP a day after my annual blood tests... Here we go again :rofl:

So it seems my HbA1c is now 84. Yikes. I'm booked in for an emergency CT scan tomorrow to check nothing acute is happening with my pancreas (GP mentioned the C word a few times, good to rule that out!) but I've also been started on Metformin. I'm currently taking 500mg in the morning, but I have to ramp that up over 3 weeks to hit 1500mg total daily. I've bought a monitor and have probably pricked my finger 30 times in the last few days but so far no real pattern is emerging in the results. Most have been around 8mmol/l but I was 10.3 this morning when I would have expected it to be at its lowest, so I have a lot to learn 🙂 I've ordered a Freestyle Libre sensor on the free trial, might be useful to get a plot of whats going on over the course of a few days. I'm an engineer, the numbers will comfort me if nothing else 😛

They couldn't get me an appointment with the Diabetes nurse until the 22nd so I'm making it up as I go along until then but it seems I need to avoid carbs and hang tight for the time being. I'd be interested to hear from anyone thats been in a similar boat, I'm not even sure what type of Diabetes I have right now or what the medium/long term implications might be.

Thanks! John
 
I forgot to mention - in the last few months I've had 3 bouts of what I thought was IBS but could well have been a resurgence of the pancreatitis. This could go a long way to explaining the situation, but then raises the question what has caused the pancreatitis to come back given I don't drink and dont have a gall bladder 🙄
 
Hi @JhnBssll and welcome.
I'm also diabetic (Type 3c) following severe acute necrotising pancreatitis.

My experience looks similar to yours - multiple organ failure, 2 months in ICU, 6 months in hospital, necrosectomy and, about 6 months later, gall bladder removal.

I've been on insulin from the start and Creon as soon as I managed to eat anything.

Good to hear that you're having the CT scan. Hopefully that will rule out anything too worrying.

With the amount of pancreatic damage you've got it could be that you've reached the point where your pancreas can't manage any more. If you end up needing insulin there will be lots of advice for you on here.

Hope the current symptoms settle down and that you have some good news from the scan.

Please keep us posted and if you have any questions please ask.
 
It's strange finding so many folk in one forum that have had such similar experiences; until now its been a very lonely club to be a member of!

My surgeon at Addenbrookes told me this day would come so it's no great surprise, I guess I'd just hoped it would come a little further down the road. Hey ho, just another challenge to navigate I guess 🙂 I'm certainly grateful that there's so much knowledge and experience here to tap in to, although also a little sorry as I know only too well what you've been through to need that knowledge...

Hoping I won't have to wait too long for the scan results and will post back when I've got an update.
 
It's strange finding so many folk in one forum that have had such similar experiences; until now its been a very lonely club to be a member of!

My surgeon at Addenbrookes told me this day would come so it's no great surprise, I guess I'd just hoped it would come a little further down the road. Hey ho, just another challenge to navigate I guess 🙂 I'm certainly grateful that there's so much knowledge and experience here to tap in to, although also a little sorry as I know only too well what you've been through to need that knowledge...

Hoping I won't have to wait too long for the scan results and will post back when I've got an update.

Just to add that I'm under the hospital endocrinology department and have access to the same treatment as a Type 1 diabetic. This allowed me to have Libre 2 on prescription, although GPs should now be able to prescribe them.
You may want to consider asking for a referral.
 
I'm not even sure what type of Diabetes I have right now or what the medium/long term implications might be.
As a principle the Type of Diabetes is a consequence of the cause. Damage to one's pancreas leading to diabetes is in the Type 3 grouping, various flavours from 3a to 3k (I think) but damage specifically from pancreatitis is Type 3c. I think Type 3c is the greater part of all the Type 3s. The treatment options (nothing, oral meds or insulin) are not precursors for the Type diagnosis.

I surrendered my pancreas completely to arrest pancreatic cancer, which also makes me 3c and I am totally insulin dependent. There is at least 1 Type 3c on this forum who is on oral medications only and a few others who were initially on oral meds and have since moved onto insulin as their treatment.

Apparently there are over 4.5 million UK citizens with diabetes. Around 90% are Type 2, 10% are Type1 and less than 1% for all other Types. Of us 'other Types' the majority of the Titles wholly inadequately explain what or why, other than Gestational diabetes ... so it is confusing amongst the community of people who have diabetes as well as professional medical people.

Because your diabetes has arisen from pancreatitis, it is possible that someone could give you the diagnosis of Type 2 - which would not only be wrong, leaving you vulnerable to well-meaning but ill-informed Health Care Professional (HCPs) - but could leave you receiving inappropriate treatment. Diabetes is complicated in its own right; add to that the issues arising from pancreatitis (with inevitable further diabetes problems as your body wrestles internally with the 2 co-morbidities) and it gets more difficult to sort out what is causing changes in blood glucose and thus how best to respond and treat.

Attached is a link from the Welcome part of this forum, mainly about Type 3c.


I strongly advise you to be alert to not accepting any diagnosis other than Type 3c. Under the NICE Guidelines Type 2s are managed by GP Surgeries, who often have a Nurse within the Practice who deals with all those patients with T2 diabetes; this Nurse is frequently titled the Diabetes Nurse but that Nurse's experience can be very limited (blinkered) by only dealing with T2s. NICE specifies that T1s should be supported by Specialist Diabetes Teams, usually Hospital based and specifically are centred around Diabetes Specialist Nurses (DSNs); DSNs not only are familiar with T1s but also the minority groups, including T3cs. Alas you might have to fight for your corner! At the very least make sure you are referred by your GP to a Specialist Diabetes Team, should that not routinely happen.

As you no doubt already know, your pancreas does various other tasks as well as making insulin. Making digestive enzymes is one of those tasks. Are you already on Pancreatic Enzyme Replacement Therapy (PERT), with Pancreatic Enzyme Insufficiency (PEI)? For many of us this means taking Creon capsules with all food.

Good luck with your CT scan tomorrow. You are likely to have a further steep learning slope ahead of you but there is a lot of help and experience within this forum, so don't hesitate to ask. No question is considered stupid.
 
Hello again John @JhnBssll, I should point out that I am absolutely NOT medically qualified, just mainly self taught out of necessity. At one time I had 6 Specialist teams caring for me, out of 2 Counties and 2 Trusts: Trusts don't trust, so don't and won't, readily share data. I spent a lot of time co-ordinating my results with other Specialists. I'm a retired Civil Engineer, so like yourself the numbers help and luckily I'm used to dealing with more than one Client and multiple Contractors within a Project.

Things suggested below are done with a conscious regard for keeping you in a favourable holding state while your CT scan gets analysed and until the relevant Consultants step up.
So it seems my HbA1c is now 84. Yikes. I'm booked in for an emergency CT scan tomorrow to check nothing acute is happening with my pancreas (GP mentioned the C word a few times, good to rule that out!)
I deduce your GP arranged the emergency CT scan, which is great in terms of GP proactively. But who is going to scrutinise that scan from the perspective of pancreatitis, diabetes and cancer? Endocrinologist or Oncologist? It would be highly unlikely that your GP has that skillset. The radiologists produce a report, highlighting key issues; but this takes time. Consultants recognise abnormalities straightaway and can direct the response if needed, even if they might subsequently need the radiology report to further inform their response.
I have personal experience of this: before my Whipples Procedure I had a routine CT scan and was fortunate enough to see my Specialist HPB Nurse an hour later because I felt "wrong". She looked at the unanalysed CT scan immediately (showed it to me) suspected a liver problem, grabbed a passing surgeon who confirmed her initial diagnosis and prescribed a generic antibiotic immediately. The medication was adjusted once the scan analysis and blood test had been fast tracked, but it transpired I was really seriously ill with a liver infection (on top of my cancerous tumour and my extreme jaundice). Very scary for a short while, but showed the HPB Department at its absolute best.

If I were in your place I would personally contact the team formerly looking after you at Addenbrookes, straightaway. If you already live in that geographical region they can find your CT scan within the convoluted NHS records and access protocols. They should readily show anything they don't have expertise in to somewhere that does.
but I've also been started on Metformin. I'm currently taking 500mg in the morning, but I have to ramp that up over 3 weeks to hit 1500mg total daily.
Be aware that metformin is a med that helps your body manage the insulin your body is already producing; it doesn't help you make any more insulin. It needs time to build up before it helps. If the metformin doesn't work, then by inference you simply aren't producing enough natural insulin to overcome your body's natural resistance to insulin; hence a steadily rising BG that isn't cleared satisfactorily. You might think of it as diagnosis through trial and error - which is a shame since there are tests that can get straight and reasonably quickly to that point. One reason why you need to be under a Consultant right now.
I've bought a monitor and have probably pricked my finger 30 times in the last few days but so far no real pattern is emerging in the results. Most have been around 8mmol/l but I was 10.3 this morning when I would have expected it to be at its lowest, so I have a lot to learn 🙂
I suggest you need to follow a method for finger pricking, rather than arbitrarily "taking snapshots", to deduce any trend. If you are already doing this, well done.
Ist thing as you wake up - to get a reference point; limited use initially for you, but helpful over a longer period. It will at least tell you if your BG is progressively rising over a lengthy period; one reading followed by a higher reading the next day is not a trend - so many other factors can cause that normal behaviour.
Immediately before a main meal, then 2hrs later; helps identify meals and specific foods that are metabolising into your blood glucose and how much your natural insulin is working. A rise of 2 to 3mmol/L after 2 hrs is normal (acceptable) and likely to be cleared by your own insulin before your next meal, back to where you were. If the rise is much greater, then there are too many carbs; so try reduced carb portions or avoid that particular food. I find rice and pasta particularly unpredictable in how my body manages them - but I can do a post meal correction insulin jab if necessary.
Then last thing before bed, as another reference point. If your last meal was c.4 hrs before bed, then that also gives some clarity about whether you have enough natural insulin to manage that meal; but I'm seeing this somewhat from ai insulin jabbing perspective.

You can and should eat some carbs, but not lots! Under 130 gms of carbs daily is a suggested threshold for a low carb diet; some go lower, but a bottom limit of 3 x 30gm carb meals was advised by Gary Scheiner in his book "Think Like a Pancreas" and the 90gm number was specifically mentioned by the "speak to a Doctor" (a Diabetes Specialist) session during my recent DAFNE course for T1s. If you go below that your body will convert proteins and fats into glucose, at a much slower rate, making the overall finger prick trend analysis very much more complicated and potentially meaningless for your purposes at this stage.
If at all possible try to not eat snacks and certainly not those that have carbs (not just sugars). These will distort or at least complicate your finger pricking trend analysis.

The finger pricking is, for you, of most use in finding foods your body can manage, because you only have limited options to correct your BG. I have insulin I can inject - no choice with no pancreas. You have exercise and keeping yourself fully hydrated amongst other tricks, which help naturally lower your body's natural insulin resistance; then whatever insulin you are producing can go a bit further.

Avoid stress - easily said, really difficult to do - but stress causes your liver to release glucose from its sugar store and once that is in your blood it can only be cleared by insulin. This will occur even if your pancreas is producing no glucagon (the hormone that tells your liver to open the store) from your panc'y damage, thanks to the hormones adrenaline and cortisol. Try to make a concious effort to step away from stressful situations, personal and social; even horror movies or "whodunnit' TV dramas generate immediate glucose releases by the liver.

High BG is a double whammy, since for the majority of people it also causes increased insulin resistance - then your (underperforming) natural insulin has further reduced efficiency.
I've ordered a Freestyle Libre sensor on the free trial, might be useful to get a plot of whats going on over the course of a few days. I'm an engineer, the numbers will comfort me if nothing else 😛
Have you already gleaned some guidance from this forum about the limitations of Freestyle Libre 2? It's useful to understand what is happening and why (perhaps) when it sometimes doesn't happen! Try a search on this forum (magnifying glass top right) and include Proud ro be erratic [no @] in the "Member" box; I've posted about the limitations periodically.

Abbott do a series of seminars which tell you a great deal about their product, but naturally they don't emphasise the limitations.

I'm a big supporter of Libre 2, even though my body and Libre don't like each other and I have excessive failures - many other folks don't experience my failure rate. But again Libre is most useful for insulin dependency; the alerts for low and high, if set at a sensible point, allow me to respond before being too low or high. If you appreciate its benefits from your trial, and IF you can afford to, you could consider purchasing one per month or even one every 6 weeks and use it as a periodic glucose monitor (each sensor only last 14 days) to allow you to update your responses to foods in particular and activity in general - periodically.

That said, you could try asking your GP to prescribe Libre for a short time, say a month until the New Year. Before April 2022 that would have been unthinkable, the NICE Guidelines simply forbade that; but today prescribing Libre is within the gift of a GP, without a Consultant's recommendation and you ought (in theory) to be able to persuade a proactive GP that a short term prescription would be a really helpful thing for you during this period of uncertainty and potential risk. The GP would be going out on a limb, but if proactive enough they could justify this to any independent scrutiny from their "masters".
They couldn't get me an appointment with the Diabetes nurse until the 22nd so I'm making it up as I go along until then but it seems I need to avoid carbs and hang tight for the time being.
As I've said, don't completely avoid carbs. You need some and managing an ultra low carb diet is complicated. Also make changes to your 'pre-latest HBA1C' diagnosis gradually, not massively (unless essential and medically recommended); abrupt changes can introduce all sorts of other problems, starting with eyesight. One's minor blood vessels don't cope well with large changes and can cause permanent damage.
Thanks! John
This is a very long response and giving a potential overload of suggestions and rationales. Apologies for that, but given the possibility of no-one doing anything until 22 Dec, plus my concern that you need to be overseen immediately by a top flight Consultant for diabetes and pancreatitis - waiting is not a good option; and understanding a bit more should help you in the meanwhile. Have you come across Gary Scheiners book, Think Like a Pancreas, already?

Good luck.
 
@Proud to be erratic This is all fantastic info thanks, very much appreciated!

No scan results as yet but I agree with you, I had wondered who would be reviewing them... Whilst the GP referred me for the scan I went private to get it done more quickly as I know time is of the essence, but hadn't considered what would would happen with the results. I have the contact details of my care team at Addenbrookes so will contact them tomorrow and see if they can access the scan as you suggest. Worth a try if nothing else!

I will see how I get on with the Libre 2 patch. I'm fortunate in that I can afford to buy a few of them every now and then to keep tabs on things but I will certainly investigate getting them prescribed if its an option.

I jumped on the turbo trainer for an hour earlier after dinner (I exercise regularly, this isn't a new thing) and took before and after blood glucose readings; 13.7 before and 8.3 after. Is this a fairly normal swing?
 
@Proud to be erratic This is all fantastic info thanks, very much appreciated!

No scan results as yet but I agree with you, I had wondered who would be reviewing them... Whilst the GP referred me for the scan I went private to get it done more quickly as I know time is of the essence, but hadn't considered what would would happen with the results. I have the contact details of my care team at Addenbrookes so will contact them tomorrow and see if they can access the scan as you suggest. Worth a try if nothing else!

I will see how I get on with the Libre 2 patch. I'm fortunate in that I can afford to buy a few of them every now and then to keep tabs on things but I will certainly investigate getting them prescribed if its an option.

I jumped on the turbo trainer for an hour earlier after dinner (I exercise regularly, this isn't a new thing) and took before and after blood glucose readings; 13.7 before and 8.3 after. Is this a fairly normal swing?
Yes. Won't be online most of tomorrow. Regards .
 
@Proud to be erratic This is all fantastic info thanks, very much appreciated!

No scan results as yet but I agree with you, I had wondered who would be reviewing them... Whilst the GP referred me for the scan I went private to get it done more quickly as I know time is of the essence, but hadn't considered what would would happen with the results. I have the contact details of my care team at Addenbrookes so will contact them tomorrow and see if they can access the scan as you suggest. Worth a try if nothing else!

I will see how I get on with the Libre 2 patch. I'm fortunate in that I can afford to buy a few of them every now and then to keep tabs on things but I will certainly investigate getting them prescribed if its an option.

I jumped on the turbo trainer for an hour earlier after dinner (I exercise regularly, this isn't a new thing) and took before and after blood glucose readings; 13.7 before and 8.3 after. Is this a fairly normal swing?
I'd say that seems about normal...
 
Still no CT results; the hospital posted the report rather than emailing, I chased them yesterday and they've now emailed it but the GP haven't reviewed it yet so I'm still in the dark. I managed to get in to the scanner within 4 days, I can only assume the results weren't deemed critical but it would be nice to get that confirmed.

I've been Continuing with a low-ish carb diet and eliminating free sugars wherever possible. I got hold of a Libre 2 sensor on the free trial and have been wearing it for around 6 days so far; its currently estimating an A1C level of 50mmol/l but this seems to be dropping slowly - presumably due to the metformin. I'm currently taking 1000mg but I'm due to ramp up to the final prescribed dose of 1500mg in the next few days so I'm expecting it to improve further next week. I've bought 2 more sensors just to get me over this hump and will decide what to do next based on the results that come through from the various tests I've had done recently.

My BG is averaging 8.1 and dropping, with time in range at 88%. It seems to spike just over 10 after eating then drops back within range again fairly quickly but these spikes seem to be reducing in amplitude, or at least starting from a lower basal level. I don't really know yet how good any of this is, hoping to learn more from the diabetes nurse tomorrow.

I'll feed back when I get more info on my diagnosis and will certainly have more questions 🙂 Thanks everyone!
 
My BG is averaging 8.1 and dropping, with time in range at 88%. It seems to spike just over 10 after eating then drops back within range again fairly quickly but these spikes seem to be reducing in amplitude, or at least starting from a lower basal level. I don't really know yet how good any of this is, hoping to learn more from the diabetes nurse tomorrow.

I'll feed back when I get more info on my diagnosis and will certainly have more questions 🙂 Thanks everyone!

Great to hear @JhnBssll 🙂

Sounds like you are making good steady progress. It’s much easier on the fine blood vessels in the eyes, and on nerve endings, to reduce elevated glucose levels gently over a period of weeks, rather than all at once - so just keep chipping away at it 🙂
 
Just back from my first appointment with the surgeries diabetes nurse. She was very pleased with my LibreLink readings and is comfortable that things are heading in the right direction. I queried her about my blood tests earlier this year and whether my A1c had jumped suddenly or crept up over time but it seems somehow they'd not been checking it despite my increased risk factors. The last results they had were from 2018 where it was absolutely fine 🙄 This seems like a bit of a failure to me but I also should have checked myself that they were requesting the right tests.

The CT scan results are still proving elusive; the hospital say they've sent them (multiple times now) whilst my GP still stubbornly deny that they've received them. I asked the hospital to speak directly to them to find out whats going on which they've now done so I'll try the GP again later this afternoon I guess. Very frustrating!

From a tech perspective I've now got my Libre 2 connected to DiaBox which is uploading to NightScout so I've got my metrics visible on my phone, watch and bicycle computer now. The Diabetes nurse is going to try and get me approved to get the Libre 2 on prescription due to the nature of my diabetes and my 'young age' - I hadn't considered 40 to be particularly young until then so I appreciated that at least. Until then I've bought two more sensors which are currently with Royal Mail so should be here by February all being well :rofl:

Onwards and upwards.
 
Update; I received my scan results today and they were as good as I could have hoped for. No changes since my last scan so no new or scary developments.

The text of the CT report reads as follows:

The pancreas is irregular with atrophy/scarring involving the neck and body. Reasonably normal appearance to the pancreatic tail and pancreatic head. There is loss of clarity to the fat planes between the pancreatic tail and the splenic hilum presumably secondary to the previous pancreatitis. No definite pancreatic masses.

The liver, spleen, adrenals, and kidneys and major vessels appear normal. No definite bowel related abnormality in upper abdomen.

Conclusion: Changes are consistent with previous pancreatitis and surgery.


I'm not going to pretend to understand the details but I like very much the bits that say 'no pancreatic masses' and the conclusion 🙂

That's a weight off my mind anyway, now to continue experimenting. It seems to work better some days than others - on Christmas day I relaxed my carb control a little and treated myself to some roast potato's and even had a little Christmas pudding for dessert. My BG stayed below 8 all day. Yesterday I ate well and controlled my carbs and it spiked to 12 for seemingly no reason. I suspect it has a sense of humour similar to my own!
 
So a question for the hivemind 🙂

My HbA1c was 9.9% when measured a month ago. Since then I've made some diet changes (cut out the sugary rubbish and reduced carbs) and started taking metformin. I ramped the dose up over 3 weeks as instructed so have now had around 9 days on the full 1500mg dose.

I've been wearing a libre 2 patch as mentioned for ~16 days now so I've aquired a decent amount of data and it's estimating my A1c at 6.3% and falling. That seems like a pretty big swing, so my question is do we think this is due to the diet and metformin alone, or is it possible that the stomach pains I'd had in the last few months were pancreatitis related and this has elevated my A1c to reach the 9.9% and without it I would have been trending lower?

Over the past 48 hours my average BG has been 6.3mmol/l which seems very good but every so often it seems my pancreas has a wobble and spikes me up to 12-14ish for seemingly no reason, I think it's broken 😛
 
Mine is 3-5 lower than my actual blood test results.
That is in mmols/mol though, not percentage. My Libre similarly predicts a few mmols lower than actual HbA1c. I really struggle to relate to the old % results so I am not sure how that would equate to your % reading. A couple of decimal places I would guess. You need to bear in mind that the Libre is also basing it's prediction on only 16 days of data and the HbA1c measures glucose stuck to your red blood cells which live for about 3 months, so if you continue for a period of 3 months with your current diet, then the predicted HbA1c will be closer to your actual reading, but if you were to have blood test today, it would still be registering the high BG readings from before your change of diet as some of those red blood cells with lots of glucose stuck to them will still be floating around in your blood stream.

As regards your significant drop in levels, changing your diet and following a low carb way of eating is a very powerful tool in reducing BG levels and the Metformin will be helping a bit too, but none of us could say one way or another if your pancreas has also been inflamed and making things worse at this time. It seems possible/likely if you have a history of pancreatitis and you have been having pain, but the change in diet alone could certainly drop your levels that significantly, if your previous diet was carb/sugar rich.
 
Thought I'd update this thread with the latest going's on 🙂

I had a poorly timed bout of Covid which meant I had to move my first hospital appointment a few weeks ago, but it went ahead on Thursday just gone. I started by telling the consultant I'd been self funding the Libre 2 sensors and sharing my LibreView account with him. He seemed pretty gobsmacked with the readings and made me talk him through everything I'd done in the last 6 weeks to get my readings down. For reference for the two weeks prior to the appointment I'd been in range 100% of the time with an estimated A1c of 5.8% (down from 9.9% measured in early December).

His first words to me after reviewing it all were "But we were going to start you on Insulin today..." - good job I'd been funding those Libre 2's, otherwise I'd have been having hupo's I'd imagine.

Anyway, the long and the short of it is he sent me on my merry way and I've got to go back in 3 months after a repeat A1c test and keep doing what I've been doing so we shall see. The frustrating thing is despite all this they won't fund the Libre sensors, so I have to keep buying them myself. Hey ho, can't put a price on your health I guess.

I'm still none-the-wiser about why my A1c was so high in December as I don't feel like I've done enough myself to make this much difference, even with the 1500mg of Metformin I'm now taking. I guess Mr Panky (as my friend now calls my pancreas haha) was having a bad spell back then!
 
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