Georgie491
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Hey! New person here! Recently diagnosed with pancreatic diabetes,being treated as type 2.
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Hi!!
- Thread starter Georgie491
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soupdragon
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- Type 3c
Welcome from another 3c, treated as Type 1.
How is your current treatment working for you?
How is your current treatment working for you?
rebrascora
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Hi and welcome from me too.
What has caused your pancreatic damage? Diabetes as a result of pancreatic damage is officially known as Type 3c but can often be misdiagnosed as Type 2 or Type 1. The treatment options depend on how significant the damage is and some people can manage for years with Type 2 oral medication whilst others need insulin quite quickly and are treated the same as Type 1s.
Which medications have they started you on and how are you managing with them?
Do you self test with finger pricks and if so, what sort of readings are you getting?
If you have any questions, do please feel free to ask.
What has caused your pancreatic damage? Diabetes as a result of pancreatic damage is officially known as Type 3c but can often be misdiagnosed as Type 2 or Type 1. The treatment options depend on how significant the damage is and some people can manage for years with Type 2 oral medication whilst others need insulin quite quickly and are treated the same as Type 1s.
Which medications have they started you on and how are you managing with them?
Do you self test with finger pricks and if so, what sort of readings are you getting?
If you have any questions, do please feel free to ask.
Georgie491
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Hi!
Currently seem to be good on insulin 2 times a day. Readings between 4.6 and 9.8 daily now.
Georgie491
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- She/Her
Hi.
I have necrotic pancreas with a cyst currently pushing into my stomach from the pancreas. My hospital can't deal so there was a mtg yesterday with a team in Sheffield. Awaiting a phone call,they cant aspirate the cyst so it's looking like they will endoscopically put a drain in it to my stomach,they need it empty before the will remove my gall bladder. The necrosis in the pancreas is walled off so they ate leaving that. No one told me I would be diabetic! I was sent home and became ill a few days later reading was 25.8! I'm on levemir 12 in morning and 4 at night. I finger prick 4 times a day.
I'm still having a lot of pain but that's the cyst apparently !
rebrascora
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So sorry to hear that you are in pain and that the cyst needs draining. I hope they get an appointment for you soon to alleviate the pressure it must be putting on your other organs.
If you are needing insulin then you should really be treated as Type 1 but you are in fact Type 3c. Diabetes Type is categorized by the cause. Type 2 is metabolic, Type 1 is due to autoimmune attack on the beta cells in the pancreas. Type 3c is caused by disease, damage or surgery to the pancreas. In your case the necrotized damage to your pancreas and the cyst.
Are you being treated for the diabetes at a specialist clinic or have you been referred to a diabetes consultant at a diabetes clinic or are you just receiving treatment and support through your GP. If so, you need to press for a referral to a clinic as your diabetes is too complex to be managed at primary care level.
How are your BG readings? I love Levemir but it is a long acting (basal) insulin and should be used alongside a "fast acting" meal time (bolus) insulin. Has this been mentioned to you? Sometimes they start people on long acting insulin first and then add in the meal time insulin once the patient has got their head around injecting and they see how levels respond.
Have they given you advice on dealing with hypos and having hypo treatments with you at all times and in particular by the bed at night and of course when you leave the house? And of course what constitutes a suitable hypo treatment. ie something fast acting like jelly babes or Glucose/Dextrose tablets. or a small carton of orange juice or a small can of full sugar Coke etc? Also if you drive you need to notify DVLA and your insurance and test before you drive and every 2 hours afterwards if it is a long journey and of course have hypo treatments with you in the car.
Hopefully you will be getting good support and know all this, but if they neglected to tell you that you might develop diabetes then one wonders what else they neglected to mention or what level of support you currently have.
Anyway, I am really pleased you have found the forum as it is a goldmine of knowledge and practical experience that you can dip into anytime at your own convenience, so please ask whatever questions you have whenever you have them and we should be able to help. If there is anything you don't understand or myself or others haven't explained too well, again, please ask for clarification. Diabetes is extremely complicated and confusing and quite individual in how we each respond to foods and medication, so there is lots of conflicting info out there and it has to become a bit of a journey of discovery about your particular diabetes but we can help steer you in the right general direction.
If you are needing insulin then you should really be treated as Type 1 but you are in fact Type 3c. Diabetes Type is categorized by the cause. Type 2 is metabolic, Type 1 is due to autoimmune attack on the beta cells in the pancreas. Type 3c is caused by disease, damage or surgery to the pancreas. In your case the necrotized damage to your pancreas and the cyst.
Are you being treated for the diabetes at a specialist clinic or have you been referred to a diabetes consultant at a diabetes clinic or are you just receiving treatment and support through your GP. If so, you need to press for a referral to a clinic as your diabetes is too complex to be managed at primary care level.
How are your BG readings? I love Levemir but it is a long acting (basal) insulin and should be used alongside a "fast acting" meal time (bolus) insulin. Has this been mentioned to you? Sometimes they start people on long acting insulin first and then add in the meal time insulin once the patient has got their head around injecting and they see how levels respond.
Have they given you advice on dealing with hypos and having hypo treatments with you at all times and in particular by the bed at night and of course when you leave the house? And of course what constitutes a suitable hypo treatment. ie something fast acting like jelly babes or Glucose/Dextrose tablets. or a small carton of orange juice or a small can of full sugar Coke etc? Also if you drive you need to notify DVLA and your insurance and test before you drive and every 2 hours afterwards if it is a long journey and of course have hypo treatments with you in the car.
Hopefully you will be getting good support and know all this, but if they neglected to tell you that you might develop diabetes then one wonders what else they neglected to mention or what level of support you currently have.
Anyway, I am really pleased you have found the forum as it is a goldmine of knowledge and practical experience that you can dip into anytime at your own convenience, so please ask whatever questions you have whenever you have them and we should be able to help. If there is anything you don't understand or myself or others haven't explained too well, again, please ask for clarification. Diabetes is extremely complicated and confusing and quite individual in how we each respond to foods and medication, so there is lots of conflicting info out there and it has to become a bit of a journey of discovery about your particular diabetes but we can help steer you in the right general direction.
Georgie491
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- Type 3c
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- She/Her
Hi, iam not driving at present. Will let them know when I start again.
I was diagnosed on 2/2/24 amd diabetes nurse at surgery has only just found out so I'm booked in with her on 21st,also have eye test soon. Nurse seems to think I won't be eligible for any diabetes course because my diabetes doesn't fit the daphne or Desmond course!
The diabetes nurse at hospital is keeping in touch but told me to ask my surgery about the courses.
I think a lot is up in air because I was so seriously ill at the beggining of January it was rough and go if I wpuld survive, only 1 in 3 survive it so I think they may be feeling their way too!
Hi Georgie and welcome and see others have already started to converse with you which is good given your very recent diagnosis.
Am sure you will find it useful to share your own experience and maybe learn from others similar experiences.
Like you I had necrotising pancreatitis which as followed by admission to hospital and then developed a large pseudocyst. My consultant was reluctant to drain it and in the end it was left to see if it resolved itself and it eventually did sone 12 months later.
They also took my gallbladder out 3 months after my pancreatitis episode whilst I had the cyst but guess it does depend on size and location.
Let me know if you have any questions or thoughts.
rebrascora
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This is the problem with a misdiagnosis or being labelled as something other than the Type 3c you are. You should qualify for DAFNE and to be honest, all Type 2's on insulin should also qualify for DAFNE, but as a Type 3c they should certainly accept you, so push the practice nurse or push for a referral to the diabetes specialist clinic if she is unable to support you by referring you for a course, or infact change your diagnosis to Type 3c which of course is well beyond her remit. You need to be supported by specialists and get access to appropriate treatment, training and technology.
Completely agree.
Sadly, people with type 2 are not entitled to all of the same treatment as someone with Type 1 such as CGMs.
I am also surprised @Georgie491 is using an insulin regime of 2 injections per day. This is likely to be a mixed insulin which assumes a fixed amount of carbs per meal at set times. Those with Type 1 use a basal/bolus insulin regime allowing us much more flexibility.
rebrascora
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Easy to miss it, but she is on split dose Levemir, so not mixed insulin, but it looks like the larger morning dose may be being used to make up for the lack of bolus mealtime insulin.
Georgie491
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Thank you,I think possibly because it's pushing against organs and there's still inflammation around it( no infection but it's not really gone down since CT in march) they're looking at draining.
Georgie.
Is a tricky one as I developed mine in May 2022 and was 4 weeks after my AP attack and my Consultant wanted to leave it due to risk of infection during operation to remove it.
So he said best to leave it unless it became infected but I wanted it drained due to my fear of it bursting.However this risk is extremely low and once I found out he could take my gallbladder out whilst the cyst was still there I was happy to leave it.
So mine did not reduce until October 22 and then by August 23 when I was diagnosed with diabetes,it had completely resolved itself hence I was pleased he left it.
About 50% resolve spontaneously but it is a call depending on what your Consultant says and like you I was not in a specialist centre.
soupdragon
Well-Known Member
- Relationship to Diabetes
- Type 3c
Good to see that you're getting good readings now and that you're being treated with insulin.
I didn't have a cyst but draining my fluid collection into my stomach was mentioned. It didn't happen in the end for me. I had a pancreatic drain in for months and later a procedure was carried out to remove the necrotic tissue.. I was lucky in that my local hospital is a specialist pancreatic centre so it's good to hear that your case is being discussed by a specialist team.
Sorry to hear that you weren't told about the possibility of diabetes. That must have been a shock.
In the long term being classified as Type 3c is important in terms of access to care, as others have mentioned.
At the moment though, I'm wishing you all the best for your recovery.
- Relationship to Diabetes
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Another vote for ensuring you press for an accurate classification @Georgie491 🙂
Many newcomers on the forum seem to be categorised as T2 when HCPs don’t quite know what to make of their case. When unusual or atypical cases really need to be split away and clearly identified. T2 treatment paths are great for the vast majority, but where diabetes has a different underlying cause this really needs to be identified.
In current healthcare, evidence-based approaches are developed by examining and balancing research which would specifically exclude cases like yours - so to get more tailored treatment and access to the widest options you need a different label. 🙂
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...
welcome to the Forum. One of my friends had chronic pancreatitis and on a couple of occasions has been extremely ill with it. She has now become diabetic and has to have insulin.
I wondered if this would be classed as Type 3C as it seemed to arise from a damaged pancreas.
I wondered if this would be classed as Type 3C as it seemed to arise from a damaged pancreas.
Thank you for that. I am almost certain she has been classified as Type 2. I will mention this to her.
No worries Maz.
Obviously it is up to the medics to classify the diabetes but many folk on here have been historically wrongly classified especially if they are unaware of Type 3c.
Entirely dependent on how much insulin your friends pancreas may or may not be producing then the 2 medicinal alternatives are Metaformin or insulin.
If they do require exogenous insulin which seems to be the case then with a Tyoe 3c diagnosis they should be entitled to a GCM.
Also the 3c diabetes tend to be more brittle as it is often not only the Beta cells but the Alpha cells ( which regulate Glucagon) which are also affected.
Presume your friend will be on Creon or something similar to help provide the digestive enzymes if there is exocrine damage as well.This normally precedes the DM diagnosis
Obviously it is up to the medics to classify the diabetes but many folk on here have been historically wrongly classified especially if they are unaware of Type 3c.
Entirely dependent on how much insulin your friends pancreas may or may not be producing then the 2 medicinal alternatives are Metaformin or insulin.
If they do require exogenous insulin which seems to be the case then with a Tyoe 3c diagnosis they should be entitled to a GCM.
Also the 3c diabetes tend to be more brittle as it is often not only the Beta cells but the Alpha cells ( which regulate Glucagon) which are also affected.
Presume your friend will be on Creon or something similar to help provide the digestive enzymes if there is exocrine damage as well.This normally precedes the DM diagnosis
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