Wake Up Call

[Spunky]

Hi Everyone

On 22nd August I suffered a stroke due to glucose sticking to my red blood cells and causing a clot in my brain. I was diagnosed with Type 2 diabetes in my early 20's and if I am honest it never really impacted my daily life and therefore I probably never took it that seriously. Now 25 years on it has shocked me into trying to take better care of myself and I thought engaging with others with similar challenges and goals might help.

A bit about me; I'm 47, in a relationship, I have a daughter who is 12.

My HBA1C when i was admitted was 124 - since then I have managed to maintain an average of about 48 through sell funding the Dexcom G6. I am concerned that as time passes and the shock wears off I will fall back into the old habits of ignoring my condition.

I currently take the following to manage my sugar levels;

2 x 850 Metformin
2 x Injection - Glargine (Toujeo) AM 72 units, PM 63 Units
I can adsjust with Novarapid if required but havent needed to since the stoke.

Feel free to ask any questions 8)

 

[rebrascora]

Hi and welcome.

So sorry to hear that you have had a stroke and hope that you will make a full recovery. Really pleased that you have come to the forum for support though as it is a goldmine of knowledge and practical advice and of course support that I have been delving into for the past 3.5 years and I can honestly say has improved my diabetes management and perhaps just as importantly, my confidence to manage it well.

Can I ask a really basic question first..... How did your diagnosis of Type 2 originally come about? Early 20s is very young to be diagnosed with Type 2 but would be a prime age for Type 1, so it is a little unusual and wondered if you could elaborate on the circumstances if you can remember them?
Also, how long have you been using insulin and that particular insulin regime which is rather odd and have you been given much support/education with your insulin usage?
You seem to have been prescribed a basal/bolus (ie long acting and short acting) insulin regime but are not using it to maximum effect and I would hazard a guess that your high Toujeo doses are also covering your mealtime needs but the NovoRapid is only being used to correct high levels instead of being used mostly for meals and also occasional corrections.
Also Toujeo is a very long lasting insulin and to the best of my knowledge it is designed for single daily dose. Since you are on quite a high dose you might need to split that dose into 2 separate injections in different sites but that would generally be done both at the same time of day. It almost seems like you have been given an insulin dose regime that was designed for a mixed insulin ie a twice a day injection morning and evening and then that transferred over to a basal insulin (Toujeo) which is not a straight switch (inappropriate use) and then the NovoRapid thrown in to try to fix problems when they arise. It just seems a mess and that you could do with an overhaul of your diabetes management/treatment by a knowledgeable Diabetes Specialist Nurse (DSN) at a diabetes clinic. Not a GP or practice nurse but someone with extensive knowledge of insulin usage.

I don't intend this to be a criticism of yourself in any way or of the NHS but unfortunately some individuals within the system don't understand the complexities of insulin usage and indeed it is not their job to know such information but I think they may have got muddled up when they were trying to assist you with your treatment and then you have tried to muddle along with what you have been given. My advice would be to ask for a referral to a DSN with a view to an overhaul of your insulin regime. May sound scary but will benefit you in the long run and might enable you to get Freestyle Libre on prescription or perhaps Dexcom One

 

[Spunky]

Hi and welcome.

So sorry to hear that you have had a stroke and hope that you will make a full recovery. Really pleased that you have come to the forum for support though as it is a goldmine of knowledge and practical advice and of course support that I have been delving into for the past 3.5 years and I can honestly say has improved my diabetes management and perhaps just as importantly, my confidence to manage it well.

Can I ask a really basic question first..... How did your diagnosis of Type 2 originally come about? Early 20s is very young to be diagnosed with Type 2 but would be a prime age for Type 1, so it is a little unusual and wondered if you could elaborate on the circumstances if you can remember them?
Also, how long have you been using insulin and that particular insulin regime which is rather odd and have you been given much support/education with your insulin usage?
You seem to have been prescribed a basal/bolus (ie long acting and short acting) insulin regime but are not using it to maximum effect and I would hazard a guess that your high Toujeo doses are also covering your mealtime needs but the NovoRapid is only being used to correct high levels instead of being used mostly for meals and also occasional corrections.
Also Toujeo is a very long lasting insulin and to the best of my knowledge it is designed for single daily dose. Since you are on quite a high dose you might need to split that dose into 2 separate injections in different sites but that would generally be done both at the same time of day. It almost seems like you have been given an insulin dose regime that was designed for a mixed insulin ie a twice a day injection morning and evening and then that transferred over to a basal insulin (Toujeo) which is not a straight switch (inappropriate use) and then the NovoRapid thrown in to try to fix problems when they arise. It just seems a mess and that you could do with an overhaul of your diabetes management/treatment by a knowledgeable Diabetes Specialist Nurse (DSN) at a diabetes clinic. Not a GP or practice nurse but someone with extensive knowledge of insulin usage.

I don't intend this to be a criticism of yourself in any way or of the NHS but unfortunately some individuals within the system don't understand the complexities of insulin usage and indeed it is not their job to know such information but I think they may have got muddled up when they were trying to assist you with your treatment and then you have tried to muddle along with what you have been given. My advice would be to ask for a referral to a DSN with a view to an overhaul of your insulin regime. May sound scary but will benefit you in the long run and might enable you to get Freestyle Libre on prescription or perhaps Dexcom One

I was originally diagnosed at 22/23 when I took a blood test to join a GP surgery in London. I have repeatedly been told I am a Type 2 even though I had many symptoms of diabetes as a child looking back.
I am under the care of the Wolfson Diabetic and Endocrine Centre at Addenbrookes in Cambridge and the regime I have been placed on was by the Diabetic Consultant at the hospital.

I have historically been very poor at looking after my diabetes and for long periods in my life simply ignored it.

During my stay in hospital a full review of my management took place which resulted in the plan above which has been a significant improvement to my levels that are averaging around 7.8 - the Toujeo I am prescribed is Doublestar so each dose / unit is x2. I was given this to stop the double injection requirement. The NovoRapid is only to be used in the event I sugar overload / over indulge. But so long as I remain sensible it generally stays in range.

So my Dexcom is set to be a target of 3.9-10.0
Since starting 52 days ago I am 87% in range 1% very high 11% high <1% low and <1% very low and averaging 7.8

 

[rebrascora]

Wow! That is surprising. I will be interested to read the comments of others but it all sounds very strange as an insulin regime, unless it was devised because it was felt that it would be easier for you to manage in view of your previous lack of care and perhaps a mixed insulin could not be dosed in sufficient quantity or perhaps the ratio of a mixed insulin didn't fit your body and it was felt that you might "switch off" if you had to carb count and inject 5 times a day.... Could that be the issue?
Was this regime set up quite recently or a long time ago?

Whatever symptoms you had as a child are unlikely to be linked to the diabetes if you are Type 1 because once you developed symptoms as a child you would almost certainly need insulin straight away and would not survive into your 20s without it. Type 1 can onset at any time in life. It has nothing really to do with being a child. It is about when your immune system gets triggered to attack and kill your beta cells in your pancreas.... those are the ones which produce insulin. I developed Type 1 at the age of 56 and there are many other late starters here on the forum. Early 20s would be a very common time for it to develop.

Feel free to ignore this question if you are not comfortable answering it but just trying to understand why they thought you were Type 2 at 22yrs old as it is unusual, particularly 25years ago.....Were you particularly overweight at that time when you were initially diagnosed? The reason I ask is that some GPs wrongly believe (a bit like you) that Type 1 is a condition which affects children, so if you are an adult and particularly if you are a bit overweight, they assume you have Type 2. Once you get that label, it is very hard to change it, so your medical records always show you as Type 2 unless someone somewhere challenges it..... We see this happen quite a lot on the forum and I myself was assumed Type 2 initially until further testing confirmed Type 1. Those tests are not routine and if no one requests them, they don't get done.

 

[Spunky]

Feel free to ignore this question if you are not comfortable answering it but just trying to understand why they thought you were Type 2 at 22yrs old as it is unusual, particularly 25years ago.....Were you particularly overweight at that time when you were initially diagnosed? The reason I ask is that some GPs wrongly believe (a bit like you) that Type 1 is a condition which affects children, so if you are an adult and particularly if you are a bit overweight, they assume you have Type 2. Once you get that label, it is very hard to change it, so your medical records always show you as Type 2 unless someone somewhere challenges it..... We see this happen quite a lot on the forum and I myself was assumed Type 2 initially until further testing confirmed Type 1. Those tests are not routine and if no one requests them, they don't get done.

Happy to answer the question - I would have been overweight on the BMI scale, but I was playing Rugby once a week and training and was fairly well built - I was sent to the hospital by the GP and they decided I was Type 2.

The lead consultant at WDEC explained to me some years ago that TYPE 2 diabetes is a bit of shallow description as there are lots of different issues that people may have that lead them to be classed as Type 2. At the time research had identified 45 types of Type 2 diabetic.

In my case he explained that my pancreas was fine and producing the correct amount of insulin but the receptors in my blood stream were not processing it correctly - and therefore I almost needed to overload on insulin to ensure got through.

As to your earlier point, yes it may be as well that history has shown them that I do not manage carb counting and multiple injections through the day and that leads me to "switch off" as you put it.

 

[everydayupsanddowns]

Welcome to the forum @Spunky

Sounds like you’ve really turned your diabetes around, well done on the huge transformations you have made.

And it sounds like the Dex is really helping you keep tabs on things too 🙂