Recently confirmed T1 after 3 year mis-diagnosis...

captaindave

Active Member
Messages
28
Hello all,

I am a 59 year old bloke, back in early 2016 i suffered a fairly dramatic weight loss ( approx 2.5 stone) over a few weeks, along with feeling thirsty all the time, going to the toilet a lot all the usual signs ..

I didnt see GP as quickly as i should have, partly because my Mom was very ill at time and partly because i thought i was on the way out and i was scared.

So when i did turn up at GP, i was at 30 on finger prick test, quickly diagnosed as T2 Diabetic, was sent up to hospital for insulin to quick-start things, before starting the usual tablet regime - Metformin, Glicazideand also Sitagliptin more recently.

Metformin was a constant, Glicazide was stopped and re-started... I did have an early "honeymoon" period where my HBAC was in 40's and i came off tablets completely,but before too long had to restart tablet regime..

In October 2018 i had blood test for antibodies to determine if i was T1 or T2 - I was seen as an unusual case because i was a good weight for my height and build, so i wasnt seen as a "typical" T2 . However result came back that i was indeed a T2.

Fast forward to recently where i was on max dose of Metformin and Glicazide ( plus 1 sitagliptin a day ) but struggling to control blood sugars. One of my diabetic nurses advised me that a specialist from nearest large hospital was going to be at my local medical centre on certain date, so i gladly accepted appointment with specialist.

The specialist gave me some shocking news I WAS A T1 !!! - she had read thru my complete notes, and at the bottom of the T1/T2 test report, it clearly stated i was a T1 - somehow this had been mis-interpreted/ miscommunicated back to me back in Oct 18... They did say that because my blood sugar control had been ok until the last couple of months, my tablet regime would have most likely continued, whether that is true i have no idea.

So as of around 2 weeks i have been injecting Long Acting Insulin ( Abasaglar Kwikpen ) once a day, alongside the Metformin.
Initially it has been getting blood sugars down. indeed on a couple of days i was near to Hypo levels... however over Xmas period have been struggling to control levels again, probably a combination of being less active ( few days off work ) and the usual Xmas food/drink excesses.
Will contact local Diabetic team tomorrow for advice and to see if number of daily Insulin units needs to be increased.

Comments / Advice etc appreciated

Thanks for listening
 

becca59

Well-Known Member
Messages
2,856
Type of diabetes
Type 1
Treatment type
Insulin
I would say insist on a proper insulin regime of basal and bolus with the most up-to date insulin. You will then be able to carb count and eat and control in the best way for your lifestyle. I think in view of the bad misdiagnosis which has not helped you for three years, you should drive the way you wish to be treated. Make sure you get referred to a good hospital team, not just the GP (who always have a desire to save money) Then if you qualify for other equipment on offer you will be seeing the right people. Also ask to go on a DAFNE course.
This time next year you will be advising others. All the best.
 

Daibell

Master
Messages
12,642
Type of diabetes
LADA
Treatment type
Insulin
Hi and welcome. Diagnosis is a mess for us adults who are quietly T1 later in life. I've been down the same route and the same max meds. I'm still listed as T2 due to stupid GPs but the surgery DN is superb. I suspect you will be moved on to Basal/Bolus insulin regime shortly. My old DN started me on just Basal but after a month added Bolus when she saw my control was not good enough. I've had a very long honeymoon period e.g. 10 years or so but yours might be much quicker so expect your insulin needs to gradually increase over time
 
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captaindave

Active Member
Messages
28
Thank you so much for the kind and informative replies -much appreciated.

Couple of questions - is Basal/Bolus just a type of insulin ?

And DAFNE course - is that Dietary advice ?

As i mentioned, I am hoping to talk to DN tomorrow, but in any case i do have an existing slot for Jan 2nd for DN to call me and check how things are going.

Also i have an appointment to see consultant at Plymouth on Jan 21st.
 

ert

Well-Known Member
Messages
2,588
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
diabetes
fasting
The DAFNE course is a comprehensive guide to living with diabetes, covering the physiology, managing exercise, well-being, injection sites, types of insulins, sick days, injections, pumps, CGM, ongoing blood sugars troubleshooting management, as well as dose adjustment for normal eating. I completed it just after starting MDI. It was game-changing.
 

captaindave

Active Member
Messages
28
Thanks again !

They have given me slow acting ( Abasaglar Kwikpen ) and fast acting ( NovoRapid FlexPen ).

Told to start on slow acting once a day,which i do around 7 AM ish, and store the fast acting in fridge for now.

One thing i forgot to mention before, a couple of times when i have pulled needle out after injecting, it has bent, possibly going into part of stomach without enough lard, as i am a bit paranoid about injecting in same place ...

The info i have already received on this forum will make me a lot more informed when i meet the consultant,cheers everyone !
 

JPW1

Well-Known Member
Messages
60
Type of diabetes
LADA
Treatment type
Insulin
Same story with me but 7 years ago until mid December this year when I was put on low does basal for 3 days which wasn't accomplishing much, then double the basal + 2 bolus low dose for 4 days then 2 higher dose for 4 days...now I'm on 3 x bolus - but fairly conservative doses at present we're getting there but still need to just get into carb counting as spikes are still pretty big after meals - need to see Dietitian first I guess (appointment coming reasonably soon). I almost went hypo yesteday with a 4.3 but only after a good gym session! Still regularly hitting 11s and 13s after meals.
 
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captaindave

Active Member
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28
Dropped a urine sample off today to be tested for Ketones - came back clear so thats good news.

Also been issued with a fancy new monitor ( GlucoRX HCT ) that measures Ketones as well as BG - But for consistency i will probably stick with my existing AgaMatrix WaveSense Jazz for BG measurement, and use the new one for Ketones...

DN thinks my recent high levels have been down to inactivity and extra food/drink consumption over Xmas, back to work on Thursday and do quite an active job, so hopefully levels will drop.
I am still just on the long-acting insulin, once a day 13 units.