Frustration of Type 2

[Faye77]

I have been diabetic for 25 years firstly starting with gestational then Type 2, I don't believe I am a type 2 I think I land in between. Been a type 2 diabetic seriously impacts your treatment options, I have been on insulin for 24 years and have never been able to control my sugars well this as caused issues with dental treatment and surgery that I need. NICE guidelines state that only type 1 have access to funded pump systems and other treatments that support the control of blood sugars but because my body still produces a small bit of insulin I cannot have support with this. How is this fair, the need is the same I clearly have a long term problem not lifestyle choice, it causing me a lot of stress, anxiety and overall the feeling that I have no support.

 

[Inka]

Welcome @Faye77 🙂 Sorry you’re feeling stressed and upset by this. Have you ever had any tests to determine your diabetes type - a C Peptide test and the Type 1 antibodies test? Those would help determine the correct diagnosis.

Personal question, but were you overweight when you had GD and/or after? You’d have been in your 20s so I’m just wondering what made them think you were Type 2?

 

[rebrascora]

Hi and welcome.

Really sorry to hear that you are feeling so frustrated and unsupported and I totally agree that Type 2 diabetics on insulin should be provided with the same support as Type 1s including the option of a comprehensive education course like DAFNE (Dose Adjustment For Normal Eating) which sounds like it is just a carb counting course but it is so much more and used to be a prerequisite for being considered for a pump.
I think that a pump isn't necessarily the solution for everyone and with modern CGM sensors it allows many more of us to manage our diabetes well on MDI but I can understand how long term insulin dependents might feel that a pump would take some of the strain off them, especially the hybrid closed loop systems.

As regards your Type 2 diagnosis, it does seem odd that you were diagnosed with Type 2 in your 20s and the fact that you needed insulin so soon after diagnosis also suggests Type 1 rather than Type 2. Sadly there are many on this forum who have had to battle years to get a correct diagnosis and one of our members @Lucyr has just got her re-designation as Type 1 earlier this week after 15 years of being labelled Type 2. Not sure if that gives you hope that these things can be overturned.

 

[Chelseagirl]

I feel your pain. Gestational x 3, diagnosed as T2 two years later. I was 8 stones when diagnosed, I’m 5’8” and looking back at a couple of photos I looked ill. I have spoken to 2 DNs and a consultant, and been refused blood tests to find out if I was T1. They said it was too long ago. Been on insulin for 30 years now.

 

[goodybags]

hi @Faye77
only recently (through this forum) really started to understand, there are so many types of Diabetes and it affects us all so differently,
plus we are all treated differently by the different HCP’s who look after us here in the UK

Ok
so obviously my Diabetes isn’t quite the same as yours
mine isn’t in anyway gestational related of that I’m sure,
but I can can appreciate the frustration your experiencing

due to what I’m currently experiencing.
Looking back, I’m thinking in fact Im so sure I was actually Diabetic a long time before this was confirmed possibly as far back as maybe 20 years before diagnosis
(or even back in my late teens) I’m now 60 so along was back
now I’m taking plenty of meds, inc inulin for aprox the last 15 years
but at last under control (fingers crossed on next Hba1c result)

I’ve been refused any funding towards CGM (which I’ve only recently stared using) I’ve decided to self fund, if there’s no way this can be funded 🙄

It was the title of your post that attracted me to read it, and I felt I had to reply,
we should have that on a TShirt

anyway welcome to the forum
sometimes it’s just better to get these things off our chest & vent (said Mr Frustrated)

 

[everydayupsanddowns]

Sorry to hear you are feeling so frustrated @Faye77

And you aren’t alone - many forum members feel just the same. Some of our T2s say they feel like second class citizens, and members of all types are horrified by the inequalities, stigma, and unfairness that seem to be baked into the system

I think one of the main problems is that diabetes is just too complex and difficult. We have many members here whose diabetes simply won’t fit into one of the neat little boxes that it’s supposed to.

Modern healthcare aims to use ‘evidence based medicine’ as a structure. Where you gather clinical trial evidence for what works most effectively for people with a particular condition on average.

But as @Docb often remarks, there is a downside to applying labels to things. Especially for those whose diabetes isn’t absolutely-classic-version-A or absolutely-classic-version-B. Plus all that averaging-out of trial data (which will all have a spread of results) misses the complexity and nuance that pretty much defines diabetes.

Gestational diabetes does often associate with later onset of T2D - but I suppose a different form of diabetes could also develop. What sorts of insulin doses are you taking? Do they suggest insulin resistance?

It might be interesting for you to get a cPeptide check to see what level of insulin production you still have when stimulated by carbohydrate - and whether that offers any clues?

 

[victorhamesse]

I feel your pain. Gestational x 3, diagnosed as T2 two years later. I was 8 stones when diagnosed, I’m 5’8” and looking back at a couple of photos I looked ill. I have spoken to 2 DNs and a consultant, and been refused blood tests to find out if I was T1. They said it was too long ago. Been on insulin for 30 years now.

Try self funding for a blood test, if possible.

 

[Proud to be erratic]

I feel your pain. Gestational x 3, diagnosed as T2 two years later. I was 8 stones when diagnosed, I’m 5’8” and looking back at a couple of photos I looked ill. I have spoken to 2 DNs and a consultant, and been refused blood tests to find out if I was T1. They said it was too long ago. Been on insulin for 30 years now.

@Chelseagirl,
I suspect that after 30 yrs it is unrealistic to hope for any blood tests now to get your diagnosis changed. But of course the main benefit would be, if T1, you should routinely be prescribed CGM.

Since the NICE Guidelines (NG28) for CGM and T2 were revised and improved in mid 2022 to allow much more discretion for insulin dependent folk to have CGM - you ought to be able to make a strong case for you to now get your Dex prescribed.

I saw that you have difficulty in getting your Surgery to respond, never mind a GP actually seeing you in the last 3 yrs. May I suggest a polite but pointed letter or email to the Practice Manager explaining that as an insulin dependent T2 you should be receiving annual checks and reviews; also that under NG 28 you should now be eligible for CGM; meanwhile your own self-funding of Dex One+ (the lowest cost CGM for the NHS), clearly shows your BG management is improved. The stumbling block is the unwillingness of the Surgery's DN to communicate and the failure of the Practice to even take on the necessary annual reviews PLUS absolutely no GP contact - so no-one reviewing your clear need for CGM since the revise to NG28 2 yrs ago.

Another member, @James Foote, explained how he got his Surgery to see sense and prescribe CGM for him.

Thread 'Type 2 How I got my Abbotts Freestyle Libre 2'

Aug 30, 2024

Hello to all,

Sorry for spelling etc I have dyslexia and rely on auto-correct so I hope this makes sense to you all.

We all know how tech has massively improved diabetics treatment but we so know these units are not cheap and not always easy to get on the NHS. Now I can only tell you how I managed to get it with the help of diabetes.org and there advice.

When I was diagnosed with steroid induced diabetes it was not much of a shock but was not welcome news. When my diabetic nurse special told me I had diabetes inasked for the Libre 2 and she told me ask the nurse she may be able to help...

• James Foote
• Replies: 0
• Forum: Pumping and Technology

• 

I appreciate his circumstances are different, but there may be a nugget or two in there that you can use. He speaks strongly about how helpful NICE were, from a phone call, in explaining why he should be eligible and then an email to him; this alone might be helpful for you.

Just a thought after reading your post.

Apologies @Faye77 for slightly highjacking your post, but perhaps you can find better assistance by grasping at a nugget from the link above?

 

[Faye77]

Welcome @Faye77 🙂 Sorry you’re feeling stressed and upset by this. Have you ever had any tests to determine your diabetes type - a C Peptide test and the Type 1 antibodies test? Those would help determine the correct diagnosis.

Personal question, but were you overweight when you had GD and/or after? You’d have been in your 20s so I’m just wondering what made them think you were Type 2?

I have never been small, but I was normal weight through my pregnancy when I was diagnosed 🙂

 

[Faye77]

Sorry to hear you are feeling so frustrated @Faye77

And you aren’t alone - many forum members feel just the same. Some of our T2s say they feel like second class citizens, and members of all types are horrified by the inequalities, stigma, and unfairness that seem to be baked into the system

I think one of the main problems is that diabetes is just too complex and difficult. We have many members here whose diabetes simply won’t fit into one of the neat little boxes that it’s supposed to.

Modern healthcare aims to use ‘evidence based medicine’ as a structure. Where you gather clinical trial evidence for what works most effectively for people with a particular condition on average.

But as @Docb often remarks, there is a downside to applying labels to things. Especially for those whose diabetes isn’t absolutely-classic-version-A or absolutely-classic-version-B. Plus all that averaging-out of trial data (which will all have a spread of results) misses the complexity and nuance that pretty much defines diabetes.

Gestational diabetes does often associate with later onset of T2D - but I suppose a different form of diabetes could also develop. What sorts of insulin doses are you taking? Do they suggest insulin resistance?

It might be interesting for you to get a cPeptide check to see what level of insulin production you still have when stimulated by carbohydrate - and whether that offers any clues?

Thank you for this, to be fair I think I had diabetes way before I was diagnosed through pregnancy I think they found it then. I am under the hospital as I cannot get my sugars under control. I agree labelling things does not get us anywhere at times and somewhere at other times so its swings and roundabouts, I just think person centred care in diabetes treatment is none existent they seem to work on your label rather than you as an individual, I truly think we should be treated as people with different needs as we are not all the same and some treatments will work better for some rather than others 🙂

 

[Faye77]

Hi and welcome.

Really sorry to hear that you are feeling so frustrated and unsupported and I totally agree that Type 2 diabetics on insulin should be provided with the same support as Type 1s including the option of a comprehensive education course like DAFNE (Dose Adjustment For Normal Eating) which sounds like it is just a carb counting course but it is so much more and used to be a prerequisite for being considered for a pump.
I think that a pump isn't necessarily the solution for everyone and with modern CGM sensors it allows many more of us to manage our diabetes well on MDI but I can understand how long term insulin dependents might feel that a pump would take some of the strain off them, especially the hybrid closed loop systems.

As regards your Type 2 diagnosis, it does seem odd that you were diagnosed with Type 2 in your 20s and the fact that you needed insulin so soon after diagnosis also suggests Type 1 rather than Type 2. Sadly there are many on this forum who have had to battle years to get a correct diagnosis and one of our members @Lucyr has just got her re-designation as Type 1 earlier this week after 15 years of being labelled Type 2. Not sure if that gives you hope that these things can be overturned.

Hi, its a nightmare and I don't think we should be given a type I think everyone should be assessed as an individual and have their own needs and plans looked at. Its a minefield ! thank you for replying 🙂

 

[Faye77]

@Chelseagirl,
I suspect that after 30 yrs it is unrealistic to hope for any blood tests now to get your diagnosis changed. But of course the main benefit would be, if T1, you should routinely be prescribed CGM.

Since the NICE Guidelines (NG28) for CGM and T2 were revised and improved in mid 2022 to allow much more discretion for insulin dependent folk to have CGM - you ought to be able to make a strong case for you to now get your Dex prescribed.

I saw that you have difficulty in getting your Surgery to respond, never mind a GP actually seeing you in the last 3 yrs. May I suggest a polite but pointed letter or email to the Practice Manager explaining that as an insulin dependent T2 you should be receiving annual checks and reviews; also that under NG 28 you should now be eligible for CGM; meanwhile your own self-funding of Dex One+ (the lowest cost CGM for the NHS), clearly shows your BG management is improved. The stumbling block is the unwillingness of the Surgery's DN to communicate and the failure of the Practice to even take on the necessary annual reviews PLUS absolutely no GP contact - so no-one reviewing your clear need for CGM since the revise to NG28 2 yrs ago.

Another member, @James Foote, explained how he got his Surgery to see sense and prescribe CGM for him.

Thread 'Type 2 How I got my Abbotts Freestyle Libre 2'

Aug 30, 2024

Hello to all,

Sorry for spelling etc I have dyslexia and rely on auto-correct so I hope this makes sense to you all.

We all know how tech has massively improved diabetics treatment but we so know these units are not cheap and not always easy to get on the NHS. Now I can only tell you how I managed to get it with the help of diabetes.org and there advice.

When I was diagnosed with steroid induced diabetes it was not much of a shock but was not welcome news. When my diabetic nurse special told me I had diabetes inasked for the Libre 2 and she told me ask the nurse she may be able to help...

• James Foote
• Replies: 0
• Forum: Pumping and Technology

• 

I appreciate his circumstances are different, but there may be a nugget or two in there that you can use. He speaks strongly about how helpful NICE were, from a phone call, in explaining why he should be eligible and then an email to him; this alone might be helpful for you.

Just a thought after reading your post.

Apologies @Faye77 for slightly highjacking your post, but perhaps you can find better assistance by grasping at a nugget from the link above?

Absolutely fine 🙂 its all interesting and relative 🙂

 

[Faye77]

hi @Faye77
only recently (through this forum) really started to understand, there are so many types of Diabetes and it affects us all so differently,
plus we are all treated differently by the different HCP’s who look after us here in the UK

Ok
so obviously my Diabetes isn’t quite the same as yours
mine isn’t in anyway gestational related of that I’m sure,
but I can can appreciate the frustration your experiencing

due to what I’m currently experiencing.
Looking back, I’m thinking in fact Im so sure I was actually Diabetic a long time before this was confirmed possibly as far back as maybe 20 years before diagnosis
(or even back in my late teens) I’m now 60 so along was back
now I’m taking plenty of meds, inc inulin for aprox the last 15 years
but at last under control (fingers crossed on next Hba1c result)

I’ve been refused any funding towards CGM (which I’ve only recently stared using) I’ve decided to self fund, if there’s no way this can be funded 🙄

It was the title of your post that attracted me to read it, and I felt I had to reply,
we should have that on a TShirt

anyway welcome to the forum
sometimes it’s just better to get these things off our chest & vent (said Mr Frustrated)

Thank you for this its good to know I am not alone ! I also think I had diabetes prior to pregnancy but it was found then, so of course another label had to be stuck on , I think a t shirt is a great idea 🙂 I have the hospital on Monday so will continue my campaign ! my GP has told me to fight for it through the consultant so we will see what happens.

 

[Inka]

I wouldn’t rule out blood tests @Faye77 I had the Type 1 tests 25 years after diagnosis (they wanted to rule out a rarer form of diabetes) and I still had antibodies, proving I was Type 1.

You said your body still produces some insulin - so have you had a C Peptide test?