Type 3

[pottersusan]

Any chance of getting Diabetes UK to mention us truly weird people on their website?

5 years ago I rang them for help (before I stumbled across this forum) and they said 'you're too complicated for us'. I suspect I would still get the same response.

There is an ever growing number of people with bits chopped off their pancreas or no pancreas at all. DUK need to catch up with the real world.

 

[Copepod]

I'm tagging @Hannah DUK to draw her attention to this matter. I hope you make some progress this time.

 

[pottersusan]

I'm tagging @Hannah DUK to draw her attention to this matter. I hope you make some progress this time.

Thanks 🙂
Also, it seems that a significant proportion us have other chronic conditions to deal with, that have a large impact on diabetes. (I am not the only complicated person on here😱)

 

[Mrs Mad Ronin]

Thanks 🙂
Also, it seems that a significant proportion us have other chronic conditions to deal with, that have a large impact on diabetes. (I am not the only complicated person on here😱)

I'm not complicated, i am unique 😛 (it's my excuse and i am sticking to it )

 

[mikeyB]

As a fellow Creonista, Susan I know what you mean. Most D consultants don't seem to understand the variable absorption of nutrients; you have no pancreas, mine is a calcified wreck, though I was T1 for years before this. I'm a sort of reverse engineered T3, which is the easy way to do it.

 

[Diabetes UK]

Thanks for bringing this to my attention @Copepod 🙂

Hi @pottersusan - Sorry to hear about your experience before and thanks for bringing this up. We take feedback across many sources and use it to shape future decisions - so the more feedback and comments, the merrier
I've raised this with our Clinical Team to see what information we currently have or whether it is being developed - so will get back to you when I have more information.

 

[pottersusan]

Thanks for bringing this to my attention @Copepod 🙂

Hi @pottersusan - Sorry to hear about your experience before and thanks for bringing this up. We take feedback across many sources and use it to shape future decisions - so the more feedback and comments, the merrier
I've raised this with our Clinical Team to see what information we currently have or whether it is being developed - so will get back to you when I have more information.

Thank you, @Hannah DUK . It has taken 5 years for a diabetes consultant to give me a definitive (ish!) answer to what I should call my particular brand of diabetes. As many people on here know I've been told I'm Type 0, Type 1.5 and Susan's diabetes.
Something else that exercises my mind is the number of medics who are still under the illusion that there are only two types of diabetes

 

[Ref]

I was very lucky. I chanced upon a consultant who understood the difference between pancreatic and other types of diabetes and a DSN at the same hospital who finds the differences interesting. Very different from my first consultant - who said having <5% of my pancreas remaining was irrelevant and i'd probably be type 2 by now anyway🙄 and the DSN who kept saying 'you're on metformin, therefore, you're type 2' and showing me a plate and suggesting foods I couldn't tolerate.

It would be helpful if DiabetesUK could recognise pancreatic diabetes.

 

[Diabetes UK]

Thank you, @Hannah DUK . It has taken 5 years for a diabetes consultant to give me a definitive (ish!) answer to what I should call my particular brand of diabetes. As many people on here know I've been told I'm Type 0, Type 1.5 and Susan's diabetes.
Something else that exercises my mind is the number of medics who are still under the illusion that there are only two types of diabetes

Gosh, it's frustrating to hear that it has taken so long for you to get an answer from your team!
I spoke with our Clinical Team who have confimed that they are aware of the lack of informaiton on our website in this area. They're currently reviewing the information and will be looking to update this in the future. I've also passed on your further comments, it's interesting to hear of @Ref 's experience with a supportive team. It highlights the benefit of increasing understanding & awareness of different forms of diabetes. Thanks @Ref

 

[anniehi]

I had a total pancreatectomy 4 years ago and I agree with Pottersusan and Ref, we want a proper label. There is no protocol or guideline for treating diabetes caused by surgery and the CCG then group us with the general type 1 population because we need insulin and then refuse IFR requests for CGMs. It is so difficult to get good control when you have no digestive enzymes and part of your stomach and all of your duodenum gone. I have self funded a CGM for 3 years because I am hypo-unaware. A bit of recognition please about this rare condition, from DUK, would help inform the CCGs @Hannah DUK

.

 

[Ref]

it's interesting to hear of @Ref 's experience with a supportive team. It highlights the benefit of increasing understanding & awareness of different forms of diabetes. Thanks @Ref

But please note, Hannah this was purely by chance. I could so easily have been left out on a limb with no support - I refuse to see those two dinosaurs again.

One point worth making is that, type 3c is rare (but on the increase it would seem), and some consultants / DSNs may never come across 'one of us' so I wouldn't expect them to be experts but the very least I would expect is (a) awareness that it exists and has its own challenges and (b) an interest and willingness to learn with and from the patient and their colleagues.

 

[pottersusan]

But please note, Hannah this was purely by chance. I could so easily have been left out on a limb with no support - I refuse to see those two dinosaurs again.

One point worth making is that, type 3c is rare (but on the increase it would seem), and some consultants / DSNs may never come across 'one of us' so I wouldn't expect them to be experts but the very least I would expect is (a) awareness that it exists and has its own challenges and (b) an interest and willingness to learn with and from the patient and their colleagues.

Here, Here.

We come back to when there is a cure for various types of diabetes (in 10 years time) - there will never be a cure for a total pancreatectomy, which makes us significantly different to other T3s. I suppose there is a chance of a pancreas transplant, but I suspect that an artificial pancreas is a better option. I already take quite a cocktail of medication and wouldn't want to add anti rejection meds to the list, to say nothing of not wanting more major surgery. I look forward to getting the next generation of pump/cgm in four years time, which as well as suspending insulin when low, will increase insulin when high

 

[Meg490]

My OH had a total pancreatectomy last year and because he was diagnosed type 2 before they found out he had IPMN in the pancreas, he is still referred to as Type 2! As you all know it's a bit different with Creon etc .

 

[pottersusan]

My OH had a total pancreatectomy last year and because he was diagnosed type 2 before they found out he had IPMN in the pancreas, he is still referred to as Type 2! As you all know it's a bit different with Creon etc .

That is more crazy than my situation! He is not T2! but he is a fellow Creonista - oh joy!!

 

[Meg490]

Oh no Susan your situation is totally different we are very lucky really that it was discovered and the total op was done before it went nasty. I watch the forum a lot and never fail to be amazed at your resilience and everyone else on here that have so many other complications to cope with.

I'm not used to posting so don't do it often and OH and myself kind of go with trial and error and take a lot of hints from here thank you all.

Hope your feeling better Susan

 

[mikeyB]

I'm a little surprised at DUK for not highlighting pancreatic diabetes, since they have a regular columnist, Arthur Smith, in Balance magazine who is most definitely a pancreatic diabetic on insulin, and presumably also a Creonista, who describes himself as Type 2, presumably because some fool told him he was. Nobody has had the heart to correct him. Or, more probably, not the knowledge to correct him. There's more than just the website needs fixing, Hannah.

 

[Northerner]

I'm a little surprised at DUK for not highlighting pancreatic diabetes, since they have a regular columnist, Arthur Smith, in Balance magazine who is most definitely a pancreatic diabetic on insulin, and presumably also a Creonista, who describes himself as Type 2, presumably because some fool told him he was. Nobody has had the heart to correct him. Or, more probably, not the knowledge to correct him. There's more than just the website needs fixing, Hannah.

I've often wondered about Arthur, I wonder how he came to be diagnosed?

 

[grovesy]

I'm a little surprised at DUK for not highlighting pancreatic diabetes, since they have a regular columnist, Arthur Smith, in Balance magazine who is most definitely a pancreatic diabetic on insulin, and presumably also a Creonista, who describes himself as Type 2, presumably because some fool told him he was. Nobody has had the heart to correct him. Or, more probably, not the knowledge to correct him. There's more than just the website needs fixing, Hannah.

I've often wondered about Arthur, I wonder how he came to be diagnosed?

I did not realise he was pancreatic Diabetic. So is the singer Chris Rea, I believe.

 

[Diabetes UK]

But please note, Hannah this was purely by chance. I could so easily have been left out on a limb with no support - I refuse to see those two dinosaurs again.

One point worth making is that, type 3c is rare (but on the increase it would seem), and some consultants / DSNs may never come across 'one of us' so I wouldn't expect them to be experts but the very least I would expect is (a) awareness that it exists and has its own challenges and (b) an interest and willingness to learn with and from the patient and their colleagues.

Of course, you were very lucky with your healthcare which I do appreciate, and that is sadly not the case for everyone.

Many of you are managing diabetes alongside other health complications or have very unique circumstances, which must lead to a lot of frustrations. reading about your experiences on here, you have had to deal with a lot of uncertainty and probably ignorance around your condition. It is an area of our resources that needs to be expanded and there is some work being done to address this, but I imagine this is the beginning and there will be much more in the future. For example, the clinical team are currently working in partnership with a number of other Health Charities, including MacMillan, to address the difficulties of managing multiple health conditions. So yes, agreed that it is something that we need more information about and the teams are working on updating Diabetes UK resources. Please do keep the feedback coming, it is great to hear where improvement is needed.