10yrs as T1D - last week undiagnosed & insulin cease immediately - it's all been a big mistake!?!

[Dunne79]

I was diagnosed Type 1 Diabetic 34/12/13, Started off on insulin injections, three short acting and one long-acting insulin before bed, 4insulin injections per day.
Recurring DKA - approx six times per year but always have high ketones but low blood sugar last time 8 ketones and 1.1 blood sugar.
3-5 hypos per week.
Lost job of 11 years in council due to recurring hypos (capability)
Haven't driven for eight years due to hypos
Lost relationship
Became anxious - only left house three times in last six months due to fear of seizures or hypos (had a fit in a supermarket and on a bus and woke up a day later in hospital due to insulin overdose)
Begged NHS to investigate. Was i really diabetic? Alwasy dismissed and laughed at.
Finally got a nurse to take me seriously.
06/06/2022 - informed that my original test results do not indicate i am diabetic. Told to stop insulin immediately and assured they investigate.
Now what? Such a bizzarre ten years. ;-)
I'm not sure what i hope to gain here, whether i'm just having a rant or what.

Please can someone offer their opnion. I'm totally lost. Xx

 

[Deleted member 504664]

For my own quick peace of mind I would eat some sugar, and test myself in two hours, if I was above 10 mmol/L then I am diabetic to a certain degree and the last ten years have not been a total mistake. Not advising you do this, but I would. Then go and see your healthcare professional for a second opinion.

 

[Fenn]

Hi, wow that’s terrible! Did you never see high numbers when you tested? Did you adjust you insulin so you didn’t hypo? Was you counting your carbs? Have a carb to insulin ratio? Sorry for all the questions.

I was under the impression that dka was caused by lack of insulin, have you had C-peptide test?

 

[ert]

Hi, wow that’s terrible! Did you never see high numbers when you tested? Did you adjust you insulin so you didn’t hypo? Was you counting your carbs? Have a carb to insulin ratio? Sorry for all the questions.

I was under the impression that dka was caused by lack of insulin, have you had C-peptide test?

DKA can have other causes such as infections.

 

[ert]

I was diagnosed Type 1 Diabetic 34/12/13, Started off on insulin injections, three short acting and one long-acting insulin before bed, 4insulin injections per day.
Recurring DKA - approx six times per year but always have high ketones but low blood sugar last time 8 ketones and 1.1 blood sugar.
3-5 hypos per week.
Lost job of 11 years in council due to recurring hypos (capability)
Haven't driven for eight years due to hypos
Lost relationship
Became anxious - only left house three times in last six months due to fear of seizures or hypos (had a fit in a supermarket and on a bus and woke up a day later in hospital due to insulin overdose)
Begged NHS to investigate. Was i really diabetic? Alwasy dismissed and laughed at.
Finally got a nurse to take me seriously.
06/06/2022 - informed that my original test results do not indicate i am diabetic. Told to stop insulin immediately and assured they investigate.
Now what? Such a bizzarre ten years. ;-)
I'm not sure what i hope to gain here, whether i'm just having a rant or what.

Please can someone offer their opnion. I'm totally lost. Xx

I'm really sorry for your struggle. This highlights the importance of a c-peptide test. In Scotland they are giving every type 1 one as long as it is 3 years after diagnosis. It is an inexpensive test for the NHS that would have saved you a lot of heartache.
https://www.nationalhealthexecutive.com/articles/scotland-type-1-diabetes-tests

 

[EllieM]

Hi @Dunne79, that is extremely bizarre and I'm glad that they are investigating. My biggest concern would be to investigate what is happening to cause the ketoacidosis. Hopefully you'll no longer get the hypos as you aren't injecting insulin?

Do you have further appointments and tests booked?

In your position, I would be pushing for a review from an endocrinologist, this looks to be way above the pay grade of the average GP (or possibly even the average A&E department).

Lots of virtual hugs. Good luck.

 

[Daibell]

Hi. It sounds like on average your insulin doses were too high? Yes, were you carb counting to match the carbs in your meal? Did you do Basal tests?

 

[Smiler99]

I was diagnosed Type 1 Diabetic 34/12/13, Started off on insulin injections, three short acting and one long-acting insulin before bed, 4insulin injections per day.
Recurring DKA - approx six times per year but always have high ketones but low blood sugar last time 8 ketones and 1.1 blood sugar.
3-5 hypos per week.
Lost job of 11 years in council due to recurring hypos (capability)
Haven't driven for eight years due to hypos
Lost relationship
Became anxious - only left house three times in last six months due to fear of seizures or hypos (had a fit in a supermarket and on a bus and woke up a day later in hospital due to insulin overdose)
Begged NHS to investigate. Was i really diabetic? Alwasy dismissed and laughed at.
Finally got a nurse to take me seriously.
06/06/2022 - informed that my original test results do not indicate i am diabetic. Told to stop insulin immediately and assured they investigate.
Now what? Such a bizzarre ten years. ;-)
I'm not sure what i hope to gain here, whether i'm just having a rant or what.

Please can someone offer their opnion. I'm totally lost. Xx

I hope you get a answer, my heart goes out to you, you've been through a rough time, please keep us updated sending hugs

 

[Zhnyaka]

Oh my God, that sounds awful! I always thought that a healthy person would die if (s)he was injected with insulin, and you had it for 10 years!