Type 1 Diagnosis...how reliable is a ketone test?

[Bertyboy]

Hi all...hope you are well!

My name is Bert, living in Bristol, UK, and I was given a Type 1 diagnosis yesterday. However, I'm wondering why the GP and DNS are so quick to diagnose this. I'm not doubting their judgement, by the way, I'm just intereseted.

A little background; apologies if it's a ramble....about a month ago, I noticed that my far vision was going bad. I just put this down to stress/tiredness from work, but not long after, I started with increasing thirst and urination frequency. By last week, I knew it was diabetes, and I assumed type 2 because of my age (39).
So, to test my theory, I ordered a BG meter from Amazon. When it arrive on Friday, I tested myself and it came out at 20.2mmol.
I immediately phoned my NHS GP and explained all this. However, they said the next they could fit me in was Dec 21st. Rather than wait, I paid to see a private GP on Monday, who tested it at ~24 (and testing over the weekend, up to 26.8 after food). He also did a urine test and said it contained "ketones" and felt it was probably type 1.
Long story short, he referred my to the DSN at the hospital. She was very nice, explained everything and did more tests, including a blood ketone test (1.1). Whilst she ordered a host of blood tests, she agreed that it was "probably" type 1, and got me booked in for all sorts of clinics, gave me a load of literature and early Christmas presents in a bag (meters, needles, sensors etc.) a prescription for Levemir and Novorapid pens, and sent me on my merry way!

Now, the good news is that, a day later, my BG is right down to 10.8 and I actually feel human. My eyesight is even noticeably better!

So, I have two questions right now, for all the seasoned experts on this forum...

1) Why is it so likely to be type 1 and not just out-of-control type 2 that could have been treated with Metformin?

2) Men - how the hell do you carry all this kit around with you (meters, pens, needles, glucose tabs) without forgetting it all the time? I'm used to having a wallet, keys and a bit of loose change in my pockets! People keep asking me how I am....the answer seems to be "in need of bigger pockets!"

Thank you!

 

[catapillar]

Why is it so likely to be type 1 and not just out-of-control type 2 that could have been treated with Metformin?

It's really very unusual for people with type 2 to be diagnosed with ketones. So the fact you had ketones suggests type 1.

It also sounds like the onset was fairly rapid for you. That also suggests type 1.

Othrr things that would suggest type 1 would be a lack of the things that indicate type 2. So do you have a family history of type 2? What's your BMI, had you lost weight prior to diagnosis, withou trying to?

If you're concerned the type isn't correct you could ask for a cpeptide test, to see how much insulin you are producing - although it should be remembered that a newly diagnosed type will probably still have some residual insulin production. And a GAD test to see if you have the antibodies associated with autoimmune type 1 diabetes - although it should be remembered that 25% of type 1s are GAD negative.

 

[Bertyboy]

Hi catapillar, thanks for the info.
No history of diabetes in the family.
I hadn't really though about weight loss. I've been slightly overweight for years and I never weigh myself nor think about my looks generally. I had sort of thought the other week that I'd lost some fat around my neck, and my jeans have had a habit of falling off my waste recently. I'd never really associated that side of it (my main gripe was more the wooly feeling of my head and the blurry vision).

The nurse did rhyme off about 7-8 specific blood tests. I didn't catch if c-peptide was one of them. I know one was to look at the immune system.

 

[Bertyboy]

*waist

 

[Circuspony]

I was mis-diagnosed as type 2 by my GP surgery (who at least saw me same day when I phoned up with my concerns). After 10 days and a trip to A&E the consultants said that if ketones were spotted in a urine or blood test then GPs should refer immediately as it is likely late onset type 1. I think that was fed back to my surgery in no uncertain terms.....

 

[paulus1]

thats stupid of your gp practice in fact its worth a complaint. attempting to make you wait could have resulted in your death. i was the same as you i knew before seeing my doctor. it was quite obvious in my case. peeing every 45 minutes with gallons of drink. the weird infections made me go. boils and abscesses. even if you check for the antibodies its not always correct. because ofthe ketones. most type2s dont get them even when they have silly numbers. yours at 1.1 shows that your body washeading
into keto acidosis if you had delayed it. hencew

hy i feel your gp practice needs a kicking. when you drop into the 5-6 glucose levels your going to need to be careful how your bloods behave. being low is a real risk until your used to the bodies reaction. personally i start with a banging headache at around 4.6 this warns me to check and eat carbs. you will be different. go slowly. and learn what makes your bloods go silly and avoid.

 

[LittleGreyCat]

I am charitably assuming that your GP instantly (if incorrectly) diagnosed T2 over the phone and decided that it wasn't life threatening and could wait.

I would consider checking out your GP practice for diabetic awareness, though, and perhaps looking around at other surgeries in the area for someone slightly more clued in.

Sadly, most GPs are not that good on diabetes. I was lucky with my practice when I was diagnosed and was seen almost immediately. Your bad luck was to discover your diabetes on a Friday.

 

[Bertyboy]

I guess the receptionists aren't medically trained though, are they? Would they even be expected to know what constituted a high BG level?
You're right though, I'd have had no idea whether to push it harder. I only paid to see someone because I'm just about clued up enough to realise that it probably was diabetes, but assumed it was type 2. As I say, I was more bothered about fixing my eyesight than anything else.

 

[paulus1]

at least you seem to have avoided the the blurred vision after getting under control. that was the worst for me. being unable to read was so annoying. i assume youve not been for your eye screening yet. just had my first all clear letter. a receptionist with even a little experience should have refereed you to a nurse to see if you needed a doctor. they are not there to decide who gets seen. if you ever need the doctor insist in future. you were very lucky to have seen the private gp.