Insulin the next step

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Peppy said:
No I’ve not had a C-peptide test, will ask my Diabetes Nurse but judging by the fact my tablets have stopped working, the nurse says it has stopped. Start off around 8 in the morning and average around 10/12 at night.
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Have you ever done any water fasting and tested your glucose while fasting?
 
Peppy said:
No I’ve not had a C-peptide test, will ask my Diabetes Nurse but judging by the fact my tablets have stopped working, the nurse says it has stopped. Start off around 8 in the morning and average around 10/12 at night.
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Have you done any before and 2 hour post meal testing, if so what are you getting from what sort of meal. Collecting some data of that would help your case for C peptide and GAD antibody testing but also if you do turn out to need insulin it will help your nurse work out what regime you may need.
 
Leadinglights said:
Have you done any before and 2 hour post meal testing, if so what are you getting from what sort of meal. Collecting some data of that would help your case for C peptide and GAD antibody testing but also if you do turn out to need insulin it will help your nurse work out what regime you may need.
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Yeah getting the data is key. I really wish I could buy a cheap CGM without a prescription here. Hopefully those get mass marketed soon, and more people, non diagnosed people can get them easily.
 
Peppy said:
I’m 5ft 7ins and 9st 7lbs.
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Your BMI is 20.8. From all the research I've read, it is extraordinarily rare for anyone with a BMI under 23 to have Type 2.

And Helli's right. It is only in recent years that research has confirmed that *most* people with Type 1 develop it over the age of 20, and it can develop at any age; once you're over 20, your chance of developing Type 1 is the same whether you're in your 30s, 40s, 50s, 60s, 70s, or even older. Unfortunately, a lot of doctors aren't yet up to speed and still think only children and young adults develop Type 1.

So, unfortunately, it is very common for older people to be misdiagnosed with Type 2 when they are really Type 1. (I mean-- when my HbA1c test came out very high, my GP assumed I was Type 2 "because of your age"-- even though, due to unintentional weight loss, my BMI had fallen to 16! I had to lean on her very hard to get the right referral leading to the right tests and the right diagnosis.)

Type 1 is an autoimmune disease, where your own immune system starts killing off your insulin-producing cells. It may be that, 5 years ago, when you were diagnosed as Type 2, your immune system had only killed off some of your insulin-producing cells-- such that your body was still producing enough insulin to keep you going with tablets and diet. So the medics diagnosed Type 2, on the basis of your age and the fact your BMI was then 29.6, and thought the fact you didn't need insulin immediately confirmed that.

But-- the fact that your BMI now is 20.8-- and it sounds as though your BMI has been in the healthy range for several years now-- and yet the diet and drugs no longer work ... That should make your medical team stop and re-evaluate.

Admiral Benbow is right. Your hospital should ensure you get a C-peptide test; this will show how much, if any, insulin your own body is still producing. The result can help a lot in clarifying whether you are really Type 1 or Type 2; and it can also help to get a better idea of how much insulin you'll need to inject.

And, if your diagnosis is changed to Type 1, that does make it easier to get the help you need from the NHS-- like a Libre 2 or other 'CGM' (continuous glucose monitor).

More generally: You say you're "really scared about injecting myself. I live alone and am also worried about hypos" ... Snap! I was diagnosed 8 months ago, in my 50s; was at first terrified about injecting and about hypos, especially with living alone.

But the needles are not what you've probably been imagining-- standard needles for insulin pens now are only 4mm long and incredibly thin. You will barely feel it; and, if you do, or are very needle-phobic, get one of these: https://www.tickleflex.com/ . I have one, and it's great-- given to me for free by my DSN, ask yours about it.

And Helli's right-- it's natural and sensible to fear hypos, but they are only very rarely a serious problem. Practically always they can be treated very easily, and we all learn how to do that and indeed how to 'head them off at the pass'.

So: Tell your medical team you're wondering whether you might actually have developed Type 1 (pointing out that your weight is so low, and has been so low for a while, that Type 2 now seems unlikely). See whether you can get them to do a C-peptide test, and preferably also the test for autoantibodies-- another test that can confirm Type 1.

And in the meantime, don't worry too much. ; ) I know, easier said than done! Wishing you all the best.
 
Spathiphyllum said:
Your BMI is 20.8. From all the research I've read, it is extraordinarily rare for anyone with a BMI under 23 to have Type 2.

And Helli's right. It is only in recent years that research has confirmed that *most* people with Type 1 develop it over the age of 20, and it can develop at any age; once you're over 20, your chance of developing Type 1 is the same whether you're in your 30s, 40s, 50s, 60s, 70s, or even older. Unfortunately, a lot of doctors aren't yet up to speed and still think only children and young adults develop Type 1.

So, unfortunately, it is very common for older people to be misdiagnosed with Type 2 when they are really Type 1. (I mean-- when my HbA1c test came out very high, my GP assumed I was Type 2 "because of your age"-- even though, due to unintentional weight loss, my BMI had fallen to 16! I had to lean on her very hard to get the right referral leading to the right tests and the right diagnosis.)

Type 1 is an autoimmune disease, where your own immune system starts killing off your insulin-producing cells. It may be that, 5 years ago, when you were diagnosed as Type 2, your immune system had only killed off some of your insulin-producing cells-- such that your body was still producing enough insulin to keep you going with tablets and diet. So the medics diagnosed Type 2, on the basis of your age and the fact your BMI was then 29.6, and thought the fact you didn't need insulin immediately confirmed that.

But-- the fact that your BMI now is 20.8-- and it sounds as though your BMI has been in the healthy range for several years now-- and yet the diet and drugs no longer work ... That should make your medical team stop and re-evaluate.

Admiral Benbow is right. Your hospital should ensure you get a C-peptide test; this will show how much, if any, insulin your own body is still producing. The result can help a lot in clarifying whether you are really Type 1 or Type 2; and it can also help to get a better idea of how much insulin you'll need to inject.

And, if your diagnosis is changed to Type 1, that does make it easier to get the help you need from the NHS-- like a Libre 2 or other 'CGM' (continuous glucose monitor).

More generally: You say you're "really scared about injecting myself. I live alone and am also worried about hypos" ... Snap! I was diagnosed 8 months ago, in my 50s; was at first terrified about injecting and about hypos, especially with living alone.

But the needles are not what you've probably been imagining-- standard needles for insulin pens now are only 4mm long and incredibly thin. You will barely feel it; and, if you do, or are very needle-phobic, get one of these: https://www.tickleflex.com/ . I have one, and it's great-- given to me for free by my DSN, ask yours about it.

And Helli's right-- it's natural and sensible to fear hypos, but they are only very rarely a serious problem. Practically always they can be treated very easily, and we all learn how to do that and indeed how to 'head them off at the pass'.

So: Tell your medical team you're wondering whether you might actually have developed Type 1 (pointing out that your weight is so low, and has been so low for a while, that Type 2 now seems unlikely). See whether you can get them to do a C-peptide test, and preferably also the test for autoantibodies-- another test that can confirm Type 1.

And in the meantime, don't worry too much. ; ) I know, easier said than done! Wishing you all the best.
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Thanks for all the useful info.
 
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