insulin dependent Type 2 with poor health issues

[Glynnis Fi]

Hi Folks
i have been a bad diabetic for years, infarct i was not diagnosed or told of the diagnosis for 5 years as i was taking metaformin for poly cystic ovaries, so was quite a shock. nothing explained, no testing just on metaformin. Told off by a consultant for high sugar levels is when i finally got help from my DRs. After a heart attach i was put on insulin but the damage is done.
I have issues with my hands so at times i don't check my bloods and i have issues with needles not good when your a diabettic, I have tried the libre freestyle 2 app etc and found my sugar levels were fantastic it was so easy for me to check. so i asked my gp and told no your type 2. so i asked about an insulin pump again no. I can not aford to buy these myself and i am costing the NHS alot more that what it would cost for the pump. I have issues with my feet and legs. diabetes related, i have fast growing catteracts and problems with the back of my eyes no name a couple of issues. Is any other Type 2 have any of the same issues not being able to access something that is available to diabetics but it feels as i am being discriminated against because i dont have the magic type 1 (thouse with type 1 plese dont take offence i dont mean to upset anyone) im just frustrated. Im also Dyslexic which i have been told this is not a disability but a learning disadvantage. lol
Any advice on being able to take on the health authorities so these products are made available to type 2 diabetics who are insulin dependant and may never be able to push back to normality.
I am considering doing research project on this but first i want to see if there are other people with similar issues.

Thank you

 

[Lucyr]

I have been told the same as you, that libre / pump will help but have to self fund as type 2, which isn’t affordable, and you can’t access courses like dafne to learn to adjust insulin as a type 2 either.

What kinds of insulin are you on, and are you counting carbs or adjusting doses or using fixed doses? Even with type 1 to get a pump you’d need to show you were able to carb count and match insulin to your food, so if you’re not doing that already, starting to learn that would improve your blood sugars.

 

[EmmaL76]

Hi Folks
i have been a bad diabetic for years, infarct i was not diagnosed or told of the diagnosis for 5 years as i was taking metaformin for poly cystic ovaries, so was quite a shock. nothing explained, no testing just on metaformin. Told off by a consultant for high sugar levels is when i finally got help from my DRs. After a heart attach i was put on insulin but the damage is done.
I have issues with my hands so at times i don't check my bloods and i have issues with needles not good when your a diabettic, I have tried the libre freestyle 2 app etc and found my sugar levels were fantastic it was so easy for me to check. so i asked my gp and told no your type 2. so i asked about an insulin pump again no. I can not aford to buy these myself and i am costing the NHS alot more that what it would cost for the pump. I have issues with my feet and legs. diabetes related, i have fast growing catteracts and problems with the back of my eyes no name a couple of issues. Is any other Type 2 have any of the same issues not being able to access something that is available to diabetics but it feels as i am being discriminated against because i dont have the magic type 1 (thouse with type 1 plese dont take offence i dont mean to upset anyone) im just frustrated. Im also Dyslexic which i have been told this is not a disability but a learning disadvantage. lol
Any advice on being able to take on the health authorities so these products are made available to type 2 diabetics who are insulin dependant and may never be able to push back to normality.
I am considering doing research project on this but first i want to see if there are other people with similar issues.

Thank you

Hi, having been told I was type 2 a year ago which has changed to type one because I don’t fit the type 2 mould and had slightly raised antigad, I’m now managing through diet and exercise without insulin or tablets I’m now in the position where my diagnoses may change back to type 2. I have noticed a huge amount of difference between the way 1 and 2’s are treated. Im lucky that I have the freestyle on prescription and my prescriptions are free due to the type 1 current status. But this may not last, I would self fund if this were to be the case which again I’m lucky that I can do that but it made me think about all the people that can’t afford to do that and the impact this has on their health. I think all diabetics no matter what their number or variation would benefit greatly from a CGM as they make a huge difference, I felt a certain amount of punishment in the tone of doctors when I was considered a type 2. This may not be the case for everybody but the information I was given was not great and not really relevant to me, my bmi was 19 and I was told to lose weight which I did. As a type 2 I was given 50 test strips a month on my prescription, you can gain zero control of your BS testing 1.5 times a day ! I’m sorry you haven't had the best time and continue to struggle, I really hope things start looking up for you and that you get the help that you need. I realise that the type 2 population is vast, and issuing freestyle to all of these would be costly but without control I’m sure these people cost more with their complications due to diabetes in the long term. I dunno my opinion only. All the best xx

 

[helli]

@Glynnis Fi sorry to read about your troubles.
I think it makes absolutely no sense that you are not entitled to Libre when your treatment is the same as that for someone with Type 1 and you are just as likely to have hypos, etc. HOwever, bear in mind that the target for people with Type 1 is that only 20% of us are lucky enough to get Libre on prescription in England - Libre is not a given.
Whilst the same it true for an insulin pump with regard to why Type 1 entitles you to the possibility (and only a possibility - far less people have pumps than Libre) but not type 2, pumps are not easy. I am in the very privileged position to have an insulin pump. Yes, even amongst people with Type 1, a pump is a privilege not a certainty.
My diabetes management has greatly improved with a pump but it takes a lot more work than injecting - initially, I needed to work out my basal patterns, then I need to tweak them, then I need to carb count much more accurately which means taking more insulin readings (I had to push hard for a Libre so was doing 10+ finger pricks per day).

I understand the dislike of needles. Is it possible to talk to your doctor about the posibiliity of a different type of lancet stabber or doing it someone instead of your fingers (there are alternative sites)?

 

[Inka]

Just to point out that I’m a magic Type 1 and I can’t get a Libre. Some authorities have basically made it almost impossible to get one.

 

[EmmaL76]

Just to point out that I’m a magic Type 1 and I can’t get a Libre. Some authorities have basically made it almost impossible to get one.

I had no idea not all type 1’s can get libre? I feel bad now. So are you saying it’s a postcode thing ?

 

[Kaylz]

While available to Type 1 neither is definite for a Type 1, we have to jump through hoops to get the benefits of these and often get refused them too so there's nothing "magic" about it xx

 

[Inka]

I had no idea not all type 1’s can get libre? I feel bad now. So are you saying it’s a postcode thing ?

Yes. Although the government supposedly stopped it being a postcode lottery, individual health authorities have added their own ‘criteria’. Except they’re not really criteria at all - not in any medical sense. They’re a way to limit the number of Type 1s having one. I qualify on more than one national criteria, but my local authority have added ridiculous hoops meaning that I can’t get one and neither can many other Type 1s.

 

[vikki]

Hi Folks
i have been a bad diabetic for years, infarct i was not diagnosed or told of the diagnosis for 5 years as i was taking metaformin for poly cystic ovaries, so was quite a shock. nothing explained, no testing just on metaformin. Told off by a consultant for high sugar levels is when i finally got help from my DRs. After a heart attach i was put on insulin but the damage is done.
I have issues with my hands so at times i don't check my bloods and i have issues with needles not good when your a diabettic, I have tried the libre freestyle 2 app etc and found my sugar levels were fantastic it was so easy for me to check. so i asked my gp and told no your type 2. so i asked about an insulin pump again no. I can not aford to buy these myself and i am costing the NHS alot more that what it would cost for the pump. I have issues with my feet and legs. diabetes related, i have fast growing catteracts and problems with the back of my eyes no name a couple of issues. Is any other Type 2 have any of the same issues not being able to access something that is available to diabetics but it feels as i am being discriminated against because i dont have the magic type 1 (thouse with type 1 plese dont take offence i dont mean to upset anyone) im just frustrated. Im also Dyslexic which i have been told this is not a disability but a learning disadvantage. lol
Any advice on being able to take on the health authorities so these products are made available to type 2 diabetics who are insulin dependant and may never be able to push back to normality.
I am considering doing research project on this but first i want to see if there are other people with similar issues.

Thank you

I agree its awful to be refused sensors pumps etc because we are type 2 .Maybe it should be allowed for type 2 who are slim and active and its genetic, fund my own sensors and on apension its not easy .Glynnis I hope you go on okay x

 

[EmmaL76]

Yes. Although the government supposedly stopped it being a postcode lottery, individual health authorities have added their own ‘criteria’. Except they’re not really criteria at all - not in any medical sense. They’re a way to limit the number of Type 1s having one. I qualify on more than one national criteria, but my local authority have added ridiculous hoops meaning that I can’t get one and neither can many other Type 1s.

When my DN found out I was self funding she said you don’t need to do that, your entitled as a type 1, it took a couple of months to sort paperwork etc but I haven’t even done a DAFNE! I’m so sorry you guys don’t all get the same treatment. Genuinely ruined my day

 

[goodybags]

@Glynnis Fi
welcome to the forum and good luck on the journey
I’m guessing for you its the finger pricking that’s the worst ? as it was for me,
for the insulin injections we can rotate around so many places (plus they can sometimes issue finer needles for your pen if yo ask)

Have you considered getting a Acu-Check FastClix (lancing device)
for the finger stabbing, I saw people recommend them on the forum
and it’s far better than what came with any of the meters I’ve previously used.

@EmmaL76 I know exactly what your saying about the attitude of some GP’s and the strips,
having previously had to point out to a GP,
if I only tested on waking, then pre meal times that needs 120 a month (without any post meal testing)
so what good is 50 ?
plus as I’m driving and on insulin.
I felt I should keep a a 2nd kit in the car, (hypo awareness)
in the end he agreed and upped the prescription to 100 then 200 (although recently this was questioned and needed a separate review)

 

[helli]

Libre and pumps are no way guaranteed for those with Type 1.
As I mentioned, I am incredibly lucky to have both but the risk of these being taken away hangs over me all the time if I can't prove that I am making the most out of them.

 

[Inka]

When my DN found out I was self funding she said you don’t need to do that, your entitled as a type 1, it took a couple of months to sort paperwork etc but I haven’t even done a DAFNE! I’m so sorry you guys don’t all get the same treatment. Genuinely ruined my day

Thanks for your empathy @EmmaL76 🙂 The issue is the pen-pushers who control the finances. It infuriates my consultant too. They’re constantly moving the goal-posts so every time someone achieves the ridiculous additional ‘criteria’ they’ve added on, they simply add more. My consultant has confirmed it’s all about limiting the numbers having the Libre because - and this is a direct quote - “too many people were benefiting from them”. Yes, they know they help but they’re purposely limiting the numbers who get one to a tiny few, largely those who got them very early on before the authority realised how many Type 1s would benefit and so added their protective fences. I don’t have the emotional reserves to do so but I wish someone would take them to court.

@Glynnis Fi Moving on to the question of a pump, only a small percentage of Type 1s get one. If you’re not carb-counting and have hand issues, they might not be ideal for you anyway. They take a lot of work and need user input. A pump used poorly will give just as bad control as injections. it doesn’t take over control, you still have to do that.

 

[EmmaL76]

Thanks for your empathy @EmmaL76 🙂 The issue is the pen-pushers who control the finances. It infuriates my consultant too. They’re constantly moving the goal-posts so every time someone achieves the ridiculous additional ‘criteria’ they’ve added on, they simply add more. My consultant has confirmed it’s all about limiting the numbers having the Libre because - and this is a direct quote - “too many people were benefiting from them”. Yes, they know they help but they’re purposely limiting the numbers who get one to a tiny few, largely those who got them very early on before the authority realised how many Type 1s would benefit and so added their protective fences. I don’t have the emotional reserves to do so but I wish someone would take them to court.

@Glynnis Fi Moving on to the question of a pump, only a small percentage of Type 1s get one. If you’re not carb-counting and have hand issues, they might not be ideal for you anyway. They take a lot of work and need user input. A pump used poorly will give just as bad control as injections. it doesn’t take over control, you still have to do that.

This stinks and I don’t like it one little bit

 

[everydayupsanddowns]

Welcome to the forum @Glynnis Fi

Sorry you have run into regulation barriers to accessing technology that might make managing your diabetes easier

I think there are clinical studies underway which are looking at the effectiveness of Libre sensors in T2, but sadly these things can take years of painstaking work and campaigning

It also seems to be complicated by a variety of atypical presentations that sometimes get lumped under the T2 umbrella - which I think divides into various subtypes.

Hope the forum helps you in the meantime, and gives you some new strategies to try.

 

[trophywench]

@EmmaL76 - DAFNE is only appropriate when one uses insulin, it stands for Dose Adjustment For Normal Eating and teaches you how to do exactly that with insulin.

 

[EmmaL76]

@EmmaL76 - DAFNE is only appropriate when one uses insulin, it stands for Dose Adjustment For Normal Eating and teaches you how to do exactly that with insulin.

Yes I know. I’m type treated as a type 1, and when I was prescribed the libre I as I was using insulin and id never done the DAFNE. That what I meant. I was actually concerned that I managed to get mine pretty easily compared to some others.