New member to forum

[dougie19]

Hi all, I have just joined the forum and am introducing myself, I was diagnosed in 2019 with type 1 after suffering pancreatitis and gall stones, it ended up my pancreas got damaged and now I have to take insulin to control my blood sugar.
I have recently been told that I am eligible for the libra2+, but when I contacted my GP they say I have to get in touch with the company.
I am looking forward to reading a lot of the posts here and connecting with other people who have diabetes.

 

[Robin]

Hi all, I have just joined the forum and am introducing myself, I was diagnosed in 2019 with type 1 after suffering pancreatitis and gall stones, it ended up my pancreas got damaged and now I have to take insulin to control my blood sugar.
I have recently been told that I am eligible for the libra2+, but when I contacted my GP they say I have to get in touch with the company.
I am looking forward to reading a lot of the posts here and connecting with other people who have diabetes.

Welcome to the forum! Your GP can prescribe the Libre 2+. You shouldn’t be told to contact the company, it’s just like any other prescription item, your GP should write a prescription as with any other prescribed item.

Are you looked after solely by your GP surgery, or are you seen by a hospital clinic as well? Areas vary, I am seen mainly by the nurse at my GP surgery, but I am still 'on the books' at the hospital clinic, and although they don’t see me very often, it’s useful to have a foot in the door, because I can contact one of their much more knowledgeable specialist Diabetes nurses, if I need anything answering that's beyond the capabilities of the GP surgery.

Also, technically, It sounds like you should be classified as a Type 3c, rather than Type 1, this is quite a modern reclassification of people who have had pancreatitis as the cause of their diabetes, since Type 1 is strictly speaking an autoimmune condition. It doesn’t make much difference, in terms of insulin use, but do you need to take enzyme replacements, like Creon, as well? This is something that’s worth pushing for a referral to a consultant, since it complicates matters, and is usually beyond the training of a GP or surgery nurse.

 

[everydayupsanddowns]

Welcome to the forum @dougie19

As a minor technicality, diabetes which is brought about by damage to the pancreas from pancreatitis (or surgery, injury, etc), is more recently defined as Type 3c

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

Not all non-specialists have heard of Type 3c.

T1 really should be reserved for autoimmune diabetes.

We have a number of type 3cs (from different surgeries / flavours of pancreatitis) including @Proud to be erratic @Wendal @soupdragon @martindt1606 and @eggyg

 

[Robin]

Oops, sorry, @everydayupsanddowns , I probably edited and expanded my post while you were composing your reply,

 

[everydayupsanddowns]

No worries @Robin.

The old quick-post-later-edit switcheroo!

 

[dougie19]

Welcome to the forum! Your GP can prescribe the Libre 2+. You shouldn’t be told to contact the company, it’s just like any other prescription item, your GP should write a prescription as with any other prescribed item.

Are you looked after solely by your GP surgery, or are you seen by a hospital clinic as well? Areas vary, I am seen mainly by the nurse at my GP surgery, but I am still 'on the books' at the hospital clinic, and although they don’t see me very often, it’s useful to have a foot in the door, because I can contact one of their much more knowledgeable specialist Diabetes nurses, if I need anything answering that's beyond the capabilities of the GP surgery.

Also, technically, It sounds like you should be classified as a Type 3c, rather than Type 1, this is quite a modern reclassification of people who have had pancreatitis as the cause of their diabetes, since Type 1 is strictly speaking an autoimmune condition. It doesn’t make much difference, in terms of insulin use, but do you need to take enzyme replacements, like Creon, as well? This is something that’s worth pushing for a referral to a consultant, since it complicates matters, and is usually beyond the training of a GP or surgery nurse.

Thanks for getting in touch. I will try and contact the diabetic team at my hospital and see what they say. I have thought that type 3c was what I should have been diagnosed with, but thought the diabetic team would have known, will take this up with them as well. Once again thank you for your response

 

[dougie19]

Welcome to the forum @dougie19

As a minor technicality, diabetes which is brought about by damage to the pancreas from pancreatitis (or surgery, injury, etc), is more recently defined as Type 3c

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

Not all non-specialists have heard of Type 3c.

T1 really should be reserved for autoimmune diabetes.

We have a number of type 3cs (from different surgeries / flavours of pancreatitis) including @Proud to be erratic @Wendal @soupdragon @martindt1606 and @eggyg

Will discuss this with my diabetic team thank you

 

[rebrascora]

Hi and welcome from me too.

Your diabetes team should write to your GP and advise them of what you should be prescribed. The GP is wrong to say that you need to contact the manufacturer and can prescribe it themselves but will be more likely to do so if they are instructed by the hospital team. You are probably eligible to apply to Abbott for a free 15 trial of their Freestyle Libre 2 Plus sensor system, so you could do that whilst you are waiting for your team to sort out your prescription with your GP. You should also be eligible for an intensive education course like DAFNE (Dose Adjustment For Normal Eating) if you are on Multiple Daily Injections (MDI) involving a Basal/Bolus insulin regime. It is much more than just a carb counting course and teaches you how to keep yourself safe with insulin in all manner of every day situations including illness and exercise and social events and gives you guidance on adjusting your basal insulin doses as well as carb counting and adjusting bolus insulin for whatever you wish to eat and how and when to do corrections.

Do you also need Creon or other digestive enzyme supplement? This helps with digestion if your pancreas is damaged to the point that it doesn't produce enough digestive enzymes itself. Have you been tested for Pancreatic Enzyme Insufficiency which can cause weight loss and bowel problems. It is usually a Faecal Elastase Test. Type 3c can be a bit more tricky than straightforward Type 1 which is just loss of insulin production, so you do need to ensure you get the correct diagnosis and support and educate yourself as much as possible, because many Health Care Professionals don't know much about Type 3c and some have never even heard of it.

 

[dougie19]

Hi and welcome from me too.

Your diabetes team should write to your GP and advise them of what you should be prescribed. The GP is wrong to say that you need to contact the manufacturer and can prescribe it themselves but will be more likely to do so if they are instructed by the hospital team. You are probably eligible to apply to Abbott for a free 15 trial of their Freestyle Libre 2 Plus sensor system, so you could do that whilst you are waiting for your team to sort out your prescription with your GP. You should also be eligible for an intensive education course like DAFNE (Dose Adjustment For Normal Eating) if you are on Multiple Daily Injections (MDI) involving a Basal/Bolus insulin regime. It is much more than just a carb counting course and teaches you how to keep yourself safe with insulin in all manner of every day situations including illness and exercise and social events and gives you guidance on adjusting your basal insulin doses as well as carb counting and adjusting bolus insulin for whatever you wish to eat and how and when to do corrections.

Do you also need Creon or other digestive enzyme supplement? This helps with digestion if your pancreas is damaged to the point that it doesn't produce enough digestive enzymes itself. Have you been tested for Pancreatic Enzyme Insufficiency which can cause weight loss and bowel problems. It is usually a Faecal Elastase Test. Type 3c can be a bit more tricky than straightforward Type 1 which is just loss of insulin production, so you do need to ensure you get the correct diagnosis and support and educate yourself as much as possible, because many Health Care Professionals don't know much about Type 3c and some have never even heard of it.

Thank you for the information, I take omeprazole for problems with my stomach and they seem to help. I am going to contact my diabetic team tomorrow and speak with them to see what is happening. Will investigate type 3c more and take things from there. Thank you once again

 

[everydayupsanddowns]

Hope it goes well @dougie19 - let us know how you get on with your clinic.

 

[soupdragon]

Welcome @dougie19
I'm Type 3c following pancreatitis in 2019.
I see you've been given information.about Creon and Type 3c. I'm recorded as Type 3c in some places and Type 1 when there isn't a 3c box available.
Hope you have success with getting tested for EPI.

 

[Proud to be erratic]

Welcome @dougie19. I had a total pancreatectomy in Feb '20 and my discharge paperwork from Hospital 2 weeks later, recorded me as T1. The diagnosis of T3c was still so new that my Hospital, specialising in Diabetes and pancreatic Surgery was still, then, not formally recognising T3c. They were acknowledging my status as T3c some 10 months later. This might explain why your initial diagnosis in 2019 was as T1.

As others have said, in some ways the distinction is not so important for myself, since I am fully insulin dependent - ie as if T1. But there are significant differences and in my case having absolutely no pancreatic functions makes a big difference to my D management. For instance the human brain cannot communicate directly with the liver; to tell the liver to open the liver's glucose store needs the brain to send an Enzyme or hormone to the pancreas and the pancreas sends the hormone Glucagon to the liver with the message "open the glucose store". I have no pancreatic hormones.

But that's not all. Because of some subtle damage to my stomach after the surgery removing my pancreas, periodically my body unhelpfully dumps my bowel contents with negligible warning. This is not a T1 symptom; it's a consequence of major pancreatic surgery. Pancreatitis is a T3c symptom and some people who have or had pancreatitis can sometimes lose control of their bowels. My experience over the last 5 yrs is that many Health Care Professional (HCPs) simply have no recognition or understanding of the many different T3c symptoms that can occur as a result of pancreatic damage and consequently are sometimes poorly placed to provide the best medical treatment.

T3cs are rare, probably less than 1% of all diabetes diagnoses - which doesn't help getting that best (well informed) treatment. Many T3cs are under a combination of Consultants and for some their diabetes can be secondary to their main ailment - yet that other ailment can have direct consequences for their D management. Diabetes is Complicated, Confusing and Contradictory - without T3c in the mix! Have you come across Gary Scheiner's book "Think Like a Pancreas"? I found it easy to read and very useful in improving my understanding of my diabetes. I also have learnt a huge amount from this forum. It does take time!

CGM, such as Libre 2, has been invaluable in my D management techniques. The NICE amendments in spring '22 to their Guidance Note, NG17, greatly improved the availability of CGM to people who are insulin dependent, particularly to T1s. You seem to have slipped through the net. Are you, @dougie19, getting the 8 annual Diabetes checks?