Hi anyone got experience of type 3c diabetes

[sewc]

Hi does anyone have experience of type 3c diabetes?
my husband was recently diagnosed with type 3c diabetes

 

[Inka]

Welcome @sewc Yes, indeed 🙂 There are a number of members here with Type 3c. @Proud to be erratic @eggyg @soupdragon are just a few of those.

Would you like to tell us a little about your husband’s diagnosis? Is he on insulin? If so, which ones?

 

[sewc]

he is on novorapid and lantus solostar.
He got diagnosised after going in to see his liver specialist nurse thinking he had fluid and malnutrition we could not get him to gain weight from liver problems from complications from Crohns and the advised that he had extremely high BM and Ketones. I heard them say that if i had not contacted them he could have been dead within a week

 

[Inka]

Very lucky that he got his diagnosis then! How stressful for you both! Lantus and Novorapid are used by lots of people here. As you probably know, Type 3c is often treated similarly to Type 1.

Is he also taking Creon? And is he on fixed doses of Novorapid at meal times or has he been shown how to vary the dose according to the carbs he’s about to eat?

 

[soupdragon]

Welcome @sewc
I'm Type 3c with pancreatic damage following pancreatitis.

Although it's never great to join the diabetes club it's good that things were caught in time and that they've realised it's 3c. Is he being treated by the hospital diabetes team?

I've been on insulin from the start including Lantus (now changed to Levemir) and Novorapid.
I've also been taking digestive enzymes (Creon) as soon as I was able to eat (not much pancreas left).
As @Inka asked - is your husband taking Creon? It takes a bit of juggling with doses to start with - more with fatty food. Once the dose is correct it should be much easier for him to regain weight.

Often they start people on fairly low doses of insulin to bring levels down more gently. Is your husband using fixed meal doses at the moment? Hoping you're in frequent contact with the diabetes team at the moment as there is a lot to take on board at the start.

Please ask if there is anything you'd like to know. It does get easier!

 

[Proud to be erratic]

Hi @sewc and Welcome,
I'm a slightly different Type 3c, in that I surrendered my pancreas to surgery as I had a tumour around my pancreas which turned out to be Pancreatic Cancer. This is not unique, but unusual.

Many T3cs get to join this distinguished small club because of pancreatic damage that may or may not need surgery and for some their diabetes is manageable by oral medication; alas it seems your husband has gone past that stage; but as already said Lantus as a basal (background) slower insulin and NovoRapid as a bolus (quicker acting, for meals and sometimes corrections) are very normal for anyone needing Multiple Daily Injections (MDI).

If you'd like to tell us a little more we can tailor our observations accordingly. Apart from the Creon question and fixed or variable NovoRapid doses:
for how long has your husband had Crohns disease and has that been getting progressively worse or been a rapid change?
Also, after the realisation that his Blood Glucose (BG) was extremely high and he had ketones, which incidentally sounds like he had Diabetic Ketoacidosis (DKA), did he spend some time in hospital, with further explanation about the mechanics of managing his diabetes? I ask that because there is a lot of variation across the UK in how people new to diabetes get treated in terms of explanations.

As already said by @soupdragon do feel free to ask questions. No question is stupid. We've all been through the business of stumbling around trying to know what to do and this forum has an amazing depth of knowledge amongst the members, knowledge that members are always happy to share when needed.

Meanwhile Good Luck ,

 

[trophywench]

So ... is this steroid induced T3 ?

 

[sewc]

He is on Creon, it is linked to Crohns and PSC, he has crohns since he was 18. But had PCS diagnosis 18 months ago, but been getting progressive worse for the last 6 months.
no steroids .
He was with the hospital while an inpatient - but now he has had contact with the 2ndary care team with our health board which was pre booked for type 2 diabetes.
He was in hospital for 2 weeks in the end. They gave potassium tablets - not realising he was on a low potassium diet so back tomorrow for a stomach drain to remove the fluid build up that is affecting him
currently testing 8 times a day and injecting 4 times a day

 

[Proud to be erratic]

So well done @sewc, with the testing and multiple injections. If I may comment (with the caveat that I am not medically qualified - just self educated about diabetes as a consequence of necessity during Covid lock-down and the immense help from this forum):

He is on Creon, it is linked to Crohns and PSC, he has crohns since he was 18. But had PCS diagnosis 18 months ago, but been getting progressive worse for the last 6 months.

I understand PSC as Primary Sclerosing Cholangitis, an unusual liver disease that has some symptoms akin to Ulcerative Colitis; UC affected me for much of my adult life, without any diagnosis - I just managed! However I have been in remission from UC since c. 2005, after a formal diagnosis and oral meds. I know I'm lucky!

The Creon presumably is to help with digestion of fats. My understanding from both an HPB Consultant in Oxford and Gastroenteritis Consultant in Bucks that you can't 'overdose' on Creon, which I take a lot of.

no steroids .

Often medications for liver conditions can include steroids. It certainly doesn't matter at this stage, but sometimes pancreatic functions are affected by steroids, leading to T3c diagnosis.

Strictly there is a different T3(a-k) letter that specifically covers pancreatic damage from steroids, but frankly that is insignificant right now. The main thing is that your husband has been (astutely) diagnosed as T3c, rather rhan T2. The Type of Diabetes is wholly driven by the cause, not the subsequent treatment. Your husband's diabetes is much more likely to be from pancreatic damage, rather than having a properly working pancreas, but an inability to use the insulin he might be making (= T2 diagnosis) and the treatment for his diabetes needs to be balanced against his medical needs for Crohns and now PSC.

He was with the hospital while an inpatient - but now he has had contact with the 2ndary care team with our health board which was pre booked for type 2 diabetes.

As a T3c your husband should now come under a Hospital based Specialist Team for his diabetes, which would normally be a Diabetes Specialist Nurse (DSN) and an Endocrinologist. But perhaps because of his PSC he is already under an Endocrinologist - rather than a Gastroenterologist that he might have been under for his Crohns. 2 aspects arise from this:

1. He would be best served by NOT coming under a GP's Surgery Nurse (who is often referred to as the Surgery's Diabetes' Nurse) but who is highly unlikely to have the knowledge for your husband's unusual T3c in conjunction with PSC and Crohns. That is not being rude about Surgery Diabetes Nurses competence, simply being realistic; they know a fair amount about routine T2, but not T3c and MDI. Most T2s are on oral meds only and not multiple injections.

2. You may now have 2 different Consultants involved in your husband's care, with perhaps a specialist Dietician as well. It can get very confusing about who 'has the lead' for his treatment and if in doubt ask and clarify this.

He was in hospital for 2 weeks in the end. They gave potassium tablets - not realising he was on a low potassium diet so back tomorrow for a stomach drain to remove the fluid build up that is affecting him

Your husband is best advised to take ownership of his medical condition and make sure that not only things like receiving potassiumis off-limits, but that his diabetic needs are being accommodated as well as his ailing liver. This is definitely NOT EASY.

At this stage your husband won't have much knowledge of how to manage his diabetes (but that will improve) and so could be blissfully unaware of potential contradictions from meds he is receiving, other than the insulins. For example, steroids normally (usually) elevate blood glucose (BG) which needs more insulin to control.

My personal experience, from 4 periods in hospital in the last 3 years, has been a surprising and disappointing lack of knowledge about T3c and even taking insulin - at one stage I was asked to take insulin when I was low and still falling; madness, born out of junior doctors on the wards following a protocol which was simply flawed. I say this to, hopefully, not alarm you; but to keep your husband aware that even with the best intentions Medical Practicioners can (do) make serious errors. [Potassium tablets?] I now won't surrender my insulins and other minor medications, including Creon, to the Ward nurses - after my first hospital experience, when they offered me Creon when I wasn't eating and my Omeprazole long after a meal (most effective shortly before eating to assist forthcoming digestion). All resolvable, but needs one to stay alert!

currently testing 8 times a day and injecting 4 times a day

Great.

Do you have any advice about when is best to test and what you might be looking out for? If not ask and we can assist. To get the best out of the readings, there needs to be some structure to the timings of finger pricking.

Has anyone mentioned Libre 2 or Continuous Glucose Monitoring (CGM)? As a T3c and with insulin dependency he is being treated as if T1 and is not only eligible for CGM but should try to get this prescribed quickly. It can only make his world a great deal easier! Being able to frequently scan and see what his BG is doing allows much better BG management; it doesn't replace all finger pricking but can (should) greatly reduce the number of finger pricks and given his other ailments be really helpful. Again if this is new to you, just ask here for further guidance.

Are the NovoRapid (bolus) injection doses preset by the Hospital? If so, you need to know approximately how many carbohydrates the Hospital has assumed for each meal. We all have different needs, but the Hospital has to start somewhere, so they assume certain carbohydrate to insulin ratios and should then help you adjust as necessary every few days.

Ultimately, sooner rather than later, your husband will need to learn about carbohydrates counting and consequently you will get drawn into that if you do some or most of the cooking! My wife has most graciously accepted that I will be asking about the carb content of any meal, so that I can take the appropriate amount of insulin for that meal; so all ingredients for homemade meals are jotted down for my scrutiny! Even in hospital there WILL be details about the nutritional content of all foodstuffs provided. Usually the Ward staff deny any knowledge of such information, but when gently pressed, sometimes strongly pressed, they find that info - albeit it is often in an unnecessarily complicated format and very small print.

The best way to start carb counting is to look at any packaging in your food cupboard - sadly always on the reverse side in small print for Carbohydrate content. If actual carb counting is also new to you, again just ask and members will provide guidance. I suspect, because of both longstanding Crohns and now PSC you are probably both in the habit of looking at nutritional info.

I'll stop here. Lots to take in and your husband is at the early stages of further complications, contradictions and complexity with the arrival if diabetes into the mix. Plenty of help in this forum, just ask. Below is a link about T3c, from Diabetes UK.

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of damage to the pancreas, which can happen for a few different reasons. And although...

forum.diabetes.org.uk

 

[sewc]

Luckily i am a registered Pharmacy technician, hence how i recognised something wasnt right in the first place.
it is a diabetic specialist nurse from the hospital who comes to the surgery due our remoteness.
we have a Gastroenterologist, a hepatologist and a dietician and a diabetic team. I am also lucky i am part of a Diabetes MDT team for another county at work!!
We have been told not to carb count due to the severe weight loss. we are on a must eat a certain number of calories a day.
He was fitted with a Libre 2 on thursday.
Thank you for your kind comments

 

[helli]

I am sorry to read about your husband but glad you caught it in time.

I think there is some confusion about carb counting : it is not something we do to limit the number of carbs we eat; we count the carbs in our food in order to calculate the amount of insulin we take with that food. If your husband is on fixed doses of insulin, it is equally important to count carbs. The reason is a bit back to front : fixed insulin doses will assume a certain number of carbs. If he eats more carb, his blood sugar would spike high and, if he eats less carbs, he risks going too low.
This is not related to calories as, for example, a fatty high protein meal may contain no carbs but plenty of calories.

 

[Proud to be erratic]

Luckily i am a registered Pharmacy technician, hence how i recognised something wasnt right in the first place.

He is well supported with your background, lucky guy!

it is a diabetic specialist nurse from the hospital who comes to the surgery due our remoteness.

Great.
Is he able to reach out to his DSN for assistance without specific appointments? My first DSN, during lockdown, kindly accepted photos of my scruffy manuscript entries into my logbook and by email guided me on adjustments to my insulin dosing. It was very reassuring, even if a bit 'wobbly'. We only met once and spoke on the phone once, but the sense of support at a confusing time was there.

we have a Gastroenterologist, a hepatologist and a dietician and a diabetic team. I am also lucky i am part of a Diabetes MDT team for another county at work!!
We have been told not to carb count due to the severe weight loss. we are on a must eat a certain number of calories a day.
He was fitted with a Libre 2 on thursday.

Delighted he has got Libre 2 already. Has your husband had the opportunity to view the Abbott Freestyle tutorial videos? They are pretty good, but unsurprisingly they don't mention the limitations of Libre 2 and it is equally useful to have those limitations in the back of one's mind. Ask if you are not aware of these.

One point: he should complete the Notes section on the Libre 2 app or Reader, providing at least a record of insulin taken and food eaten. From that a DSN can look at the trends in relation to the data provided by your husband. Otherwise the DSN is gazing at a crystal ball.

Is he using a phone app or the libre 2 reader? The phone app is easier to put better notes into and automatically updates LibreView by wifi; the Reader gives quicker scan readings, but needs connecting to a desktop (or laptop if it will take a USB cable) to allow the scan results to be visible by specialists from the Web based LibreView - rather than what he can see on the LibreLink app or the Reader. The DSN will provide a code that gives him/her visibility on LibreView of those results.

I use both the Reader and the phone app, getting the best of both worlds; the Reader (activated first) for alarms and frequent hasty scans; the phone app for all data inputs, including my finger prick readings, which don't necessarily exactly match my Libre 2 readings. I keep the smaller reader with me at all times and my phone is somewhere nearby for when I need it.

Thank you for your kind comments

You are welcome.

Have you been advised about needing to have hypo response food really close by at ALL times (until things settle down - months not days)? Yet another thing to know about !!!

If there is any doubt in your husband's mind about hypo response, please ask. Don't leave this to chance. Since you are concentrating on calories there is a real risk his meals can 'undercarb' the insulin he is taking. The post above, #11, from @helli is so right.

Going hypo can be dangerous in the short term (could lead to unconciousness and even a coma) and any neural damage from being low can be accumulative for the longer term. There is good reason why acceptable time "out of range", as tracked by Libre 2, is small for low glucose events, =below 4.0mmol/L (less than 4%) and noticeably more for high glucose, =above 10.0 mmol/L (up to 25%). Being fully in Range is ideal but rarely achieved and certainly not initially; even one day with 100% in range is described by us as a Unicorn day, ie very rare!

I have my alarms (I prefer to call them alerts) on Libre 2 set at 5.6 for low and 13.0 for high. I want to know when my BG starts to fall and be able to respond with a simple snack well before I get anywhere near hypo. Certainly an alert at 4.2 or any number close to 4 is way too late for me; my diabetes is very 'brittle', and my BG can drop very quickly. For your husband a simple snack could be high calorie, but negligible carbs - which would NOT help.

So carb awareness remains essential and the advice "to not carb count but must eat so many calories" is at best misleading and in my opinion could be dangerous. I wonder which of the Specialists gave that guidance and hope it was not the DSN! He will certainly need to get on board with carb counting at some point soon; I suggest you both take the opportunity now, with fixed doses, to get into the habit of knowing if the carbs he eats matches the insulin being taken. It would be possible, but extremely restrictive, to remain indefinitely on fixed doses - that quality of life would become, for me, intolerable.

Once alerted, the beauty of Libre 2 is being able to scan reasonably frequently and specifically watch the trend arrow, rather than the precise number. Snacking thereafter is fine to arrest a fall, but not too much too frequently. He needs to give the snack time to get into his metabolism; chocolate is not so good for this because of the fat content, but your husband probably avoids higher fat foods anyway. A sweet biscuit is ideal for me, ranging from 6 to 12 gms of carbs per biscuit. For reference a Nairns oat cake (biscuit) is c.6gms, a Digestive biscuit c.9gms and a Tesco Cookie with raisins c.12gms carbohydrate; most biscuit packaging gives the carb content per biscuit.

When I'm going high that is less urgent for me and I deal with highs by corrective bolus doses - but correction is for another day and preferably should come from your DSN.

Good luck.

 

[Proud to be erratic]

@sewc,
I've just Googled Diabetes MDT and now appreciate you are in a particularly good place to guide your husband. I hadn't realised there were such multidisciplinary teams and there is even NICE Guidance for this pilot scheme. Apologies, some of what I've been saying you are probably already familiar with. But hopefully it provides some background advice for others new to D.

I must look at this further, when I have a bit more time.

 

[Bryonia]

Hi does anyone have experience of type 3c diabetes?
my husband was recently diagnosed with type 3c diabetes

Hello, can you say what was the test for the 3c diagnosis? thanks!

 

[Leadinglights]

Hello, can you say what was the test for the 3c diagnosis? thanks!

Have a look at this link to the main site

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

Also the previous posts in this thread.

 

[Bryonia]

Have a look at this link to the main site

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

Also the previous posts in this thread.

Thanks; that page is very useful. It doesn't specify the tests for 3c. Is there another page with those details, do you know?

 

[rebrascora]

Hello, can you say what was the test for the 3c diagnosis? thanks!

Diabetes is a condition where the Blood Glucose levels are raised. The test for diabetes is the HbA1c test as this measures the amount of glucose stuck to the red blood cells and as red blood cells live for about 3 months this gives you an indication of your BG levels over the past 3 months. An HbA1c result of 48 or more gets you a diabetes diagnosis but the number can be up into 3 figures if things are seriously amiss. At those higher levels you would likely see symptoms but at lower levels in the 50s 60s and even 70s you would be unlikely to experience any obvious symptoms.

Once you have a diabetes diagnosis, then you look at what Type of diabetes it is.... ie the cause of it and that is where the different "Types" come into it.

Type 1 diabetes is where the body's immune system has attacked and killed off the insulin producing beta cells and there are 2 tests for that.... The C-peptide which measures how much insulin your body is producing and GAD antibody test which looks for the antibodies responsible for killing off the beta cells. These tests are not routinely done when diabetes is diagnosed due to cost and other logistical issues, so only authorized if Type 1 is suspected.

Type 1.5/LADA is a slow onset Type 1 and is often misdiagnosed as Type 2.

Type 2 is where a metabolic condition where the cells become resistant to the insulin which is responsible to removing the glucose from the blood and more and more insulin is required to overcome the resistance so the pancreas has to produce extra quantities of insulin which can effectively lead to burn out. It can also involve poor communication between the liver and pancreas which are responsible for balancing BG levels, so levels go higher than normal before coming back down and sometimes then go too low. There is no specific test for Type 2 and it is based on clinic presentation.... like being overweight and or inactive and middle aged and poor diet.

Type 3c is as a result of damage to the pancreas either by disease, surgery or trauma and many medical professionals are still not aware of the classification. Once the HbA1c diagnosis has occurred, then looking at medical history (pancreatitis or surgery for cysts or cancer or damage due to trauma) should be considered and perhaps scans to look at the condition of the pancreas. There are no specific blood tests for it. Even a C-peptide test might not help as many Type 3cs produce a reasonable amount of insulin for quite a long time before eventually needing to inject it. Obviously people who have had a complete removal of the pancreas will become insulin dependent immediately, but damage due to disease like pancreatitis or partial removal can leave the pancreas still able to produce enough for people to limp along for many years. There is a very broad range of Type 3c diabetics.

Hopefully that clarifies it for you. The first step is a diagnosis via HbA1c which is usually a blood test taken from the arm but I believe some large GP surgeries and hospitals do have instruments which can give a reading from a spot test, but they are large machines, not portable meters that we use for normal BG home testing.

 

[Bryonia]

Diabetes is a condition where the Blood Glucose levels are raised. The test for diabetes is the HbA1c test as this measures the amount of glucose stuck to the red blood cells and as red blood cells live for about 3 months this gives you an indication of your BG levels over the past 3 months. An HbA1c result of 48 or more gets you a diabetes diagnosis but the number can be up into 3 figures if things are seriously amiss. At those higher levels you would likely see symptoms but at lower levels in the 50s 60s and even 70s you would be unlikely to experience any obvious symptoms.

Once you have a diabetes diagnosis, then you look at what Type of diabetes it is.... ie the cause of it and that is where the different "Types" come into it.

Type 1 diabetes is where the body's immune system has attacked and killed off the insulin producing beta cells and there are 2 tests for that.... The C-peptide which measures how much insulin your body is producing and GAD antibody test which looks for the antibodies responsible for killing off the beta cells. These tests are not routinely done when diabetes is diagnosed due to cost and other logistical issues, so only authorized if Type 1 is suspected.

Type 1.5/LADA is a slow onset Type 1 and is often misdiagnosed as Type 2.

Type 2 is where a metabolic condition where the cells become resistant to the insulin which is responsible to removing the glucose from the blood and more and more insulin is required to overcome the resistance so the pancreas has to produce extra quantities of insulin which can effectively lead to burn out. It can also involve poor communication between the liver and pancreas which are responsible for balancing BG levels, so levels go higher than normal before coming back down and sometimes then go too low. There is no specific test for Type 2 and it is based on clinic presentation.... like being overweight and or inactive and middle aged and poor diet.

Type 3c is as a result of damage to the pancreas either by disease, surgery or trauma and many medical professionals are still not aware of the classification. Once the HbA1c diagnosis has occurred, then looking at medical history (pancreatitis or surgery for cysts or cancer or damage due to trauma) should be considered and perhaps scans to look at the condition of the pancreas. There are no specific blood tests for it. Even a C-peptide test might not help as many Type 3cs produce a reasonable amount of insulin for quite a long time before eventually needing to inject it. Obviously people who have had a complete removal of the pancreas will become insulin dependent immediately, but damage due to disease like pancreatitis or partial removal can leave the pancreas still able to produce enough for people to limp along for many years. There is a very broad range of Type 3c diabetics.

Hopefully that clarifies it for you. The first step is a diagnosis via HbA1c which is usually a blood test taken from the arm but I believe some large GP surgeries and hospitals do have instruments which can give a reading from a spot test, but they are large machines, not portable meters that we use for normal BG home testing.

Thanks, that is hugely helpful!

 

[Bryonia]

@rebrascora - Hb1Ac result has come in on my daughter's MyChart. It was 27, so well in the normal range. The 2 blood tests are normal, but we know the pancreas isn't working properly (pain and needs Creon every meal). In past few days, new symptoms of severe thirst, frequent urination, weakness, very thin and can't gain weight. Perhaps the next step is to ask GP next week to test level of insulin in blood?

 

[Lily123]

A C-Peptide and GAD antibody test seems unlikely to reveal anything amiss if the HbA1C has come back normal. It might be worth asking anyway - you never know!