Non diabetic to insulin in a heartbeat!

Hi all,

Very new to this but thought I'd start my time around here with the background.

Over the last few months I've been thirsty non-stop, waking almost hourly to go to the toilet then downing loads of refreshing water, sleeping and then waking an hour later.

My family noticed I'd lost weight recently (I hadn't noticed) but went from 16.5 stone down to around 14.9.

Been getting a sore tongue regularly - including ulcers/spots that are painful.

Last week I developed Thursh - can't say I've ever had it before.

Feeling very sleepy very early in the evening - unusual for me as I'm a night-owl.

Probably more but those are the headlines.

Arrange blood tests with doctor and results came through on Thurs evening. Was resigned to diabetes given the symptoms and doctor confirmed this.

Appointment with nurse last night. She was lovely. Did a urine test for Ketones and she initially suggested i should go to hospital as the result was in the region of 120 - 130 (don't even know what this scale is and what it means) but as i presented as well she and the doctor agreed to start me immediately on insulin instead.

My blood monitor results were in the 22 - 25mmol/l range yesterday, 18 ish today.

They want me to have a CT scan on pancreas and liver and some kind of blood test that can only be done in hospital as it needs to be completed in a short amount of time (does anyone know what that is so i can read up on it?).

Have gone from no diabetes to two insulin pens (one daily, one before meals), constant blood testing, a food diary, CT scans and who knows what else.

Am quite calm about it but was expecting a few tablets and dietary advice. I think the nurse was shocked with these levels but they mean little to me as yet - that said, I'm aware both are incredibly high.

So looks like I'll be around here a lot in the time ahead..

Any advice or views will absolutely be appreciated.

bulkbiker said:

Unexpected unintended weight loss and your levels of blood sugar and presence of ketones along side are usually indicators of a lack of insulin.
That means you're likely suffering from one of the Type 1 diabetes variants.
Your body has stopped producing or isn't producing enough insulin to regulate your blood sugars which is why they put you onto insulin injections immediately.
Tablets and dietary advice would be far more applicable to T2's.
I'm guessing the test will be either c-peptide or for GAD antibodies which will confirm diagnosis.
Hope that helps.

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Thanks, yeah I think it was the c-peptide one she mentioned. She said it had to be done within a very finite time limit. She wanted to admit me to hospital because of something in the results being so high so there was a conflab with the doctor and we agreed on this course of action. Looks like I'll be doing that test as an outpatient.

On the tablets thing, I think she was surprised when we did the urine sample test because she seems incredulous to the levels she found. Was a lovely woman though so looking forward to our next session even if its to manage a serious situation!

Jaylee said:

Hi @Carl40 ,

Welcome to the forum.

Sounds like early days for you.
Take the info in bite sized chunks, & at your own pace..

What insulins have you been prescribed?

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Hi Jaylee,

Thank you!

I've got two insulin pens - a grey Abasaglar Kiwikpen which I'm to take daily (setting 10 to begin with increasing by 2 every four days) and an orange and blue NovoRapid Flexpen which I have to use once I've tested my bloods before a meal.

Have to write all my measurements and doses in a diary alongside my food consumption to show her on wed.

She advised me to take the blood test very close to eating but wasn't sure when I was supposed to take it after eating - directly after or after a short period - can anyone advise?

I'm getting to grips with the injecting myself thing so far. Sure I'll all come good in the end!

Jaylee said:

Hi,

Around the 2 hour mark after eating..

Are you a driver.? Have you been advised regarding the DVLA & your medication.? Testing is another obligation holding a driving licence.

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Thanks. I will do that going forwards!

Driving - yep but not been advised that, nurse asked me to write down a list of questions for our next session this week. Added top of the list

TashT1 said:

Hi Carl it sounds as though you are starting off with a supportive medical team which is really good.

I’m 7 months in to a similar journey and it took until last week to 100% confirm I’m type 1. Well done for finding this forum it was really helpful to me & you seem to be taking it in your stride.

As for testing it’s important to test & inject 15-20 mins before you eat to give the novarapid time to kick in. Then you want to test 2hrs after you take your first bite of food so you can see how well the insulin worked to combat the carbs in that meal. If your levels rise by 2mmol & then fall back to your pre meal level the insulin did a good job.

Look at the diabetes uk learning centre & take in chunks of info everyday. It’s an awful lot to learn but you will feel healthy again soon once you find balance. But it will take time.

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Hi Tash,

Thanks for this. Its nice to hear you're doing well with this!

TBH when the doctor called me on Thursday he said "...I'm sorry to have to tell you that..." - I was worried it was going to be something else because I was already expecting the diabetes diagnosis. That said, wasn't expecting to come at it at this level so that was a bit of a surprise.. Is what it is though so just gonna learn as I go.

Guess if anything makes me nervous is the risk of making a mistake and making myself ill. The issue surrounding the CT scan concerns me a little too as they want to check for pancreatic cancer and fatty liver disease, just hope I get an appointment for that soon so its not left hanging over me!

Thanks for the testing and learning advice, I will definitely do that.

I'm also quite chatty and inquisitive so I guess I'll be a regular around these parts!

TashT1 said:

It’s a big shock isn’t it. Very similar to yourself I got a call at midday, checked ketones at 2pm & by 6pm I was back home with an insulin regime & a sharps bucket.

I was/ sometimes still am nervous about injecting & ive made mistakes that have resulted in high readings & hypos. It really is trial & error, getting to know your body & the million things that can affect how the insulin works.

In the early days you will find that your numbers come down slowly & your team should check in regularly. Keep as many notes as you can, the more info the better plus a list of all those random questions & worries.

I was due to have a pancreas scan as well but a blood panel came back fine so they cancelled that. When you aren’t the typical presentation for type 1 a good consultant will do lots of test to make a proper diagnosis so you might find your prodded & poked a lot in the next few months. A lot of newbies don’t have good consultants & end up pushed down the type 2 route which is very different.

One thing I’d be aware of is if the GAD results come back negative they may suggest your type 2 I would resist that until you have c-peptide results. This was the only thing that confirmed my status in the end.

Another good thing you can do is take an online hypo awareness course, it takes about an hour & it takes away some of the hypo fear.

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Just about to have lunch, blood reading 26.7 to set the injection to 14 as per my guidance. Have little context to base it on but searching around and seeing tables ending at 11mmol/l makes me slightly more concerned.

Constantly hungry at the moment but becoming a bit wary of eating - feel like I don't know if it'll do me good or bad!

Thanks for sharing your experience and knowledge, being a little further down the road than me it gives me some comfort and knowledge I didn't have before.

Didn't really know much about a hypo so have just done an online course, Lot to take in!

In a way glad i was diagnosed on a weekend, giving me a chance to learn a lot quickly. Hope all is settling for you now!

Jaylee said:

Here we go.. Not as daunting as it looks. https://www.gov.uk/diabetes-driving

Been doing this stuff since passing my test in 1986.

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Thank you, all done!

Passed mine in late 90's but this is a new one to me... have to see how things pan out.

In Response said:

Do you have hypo treatment?
Newly diagnosed usually go away with insulin, test strips and a meter.
But we are not given anything to treat hypos.
All you need is something like Dextrose tablets, jelly babies or Lucozade which is high in fast acting carbs - nothing reduced sugar.

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Thanks, no nothing for that. Nurse told me to keep some jelly babies to hand, we have some dextrose tablets in a drawer too.

Given my readings the nurse told me that we'll have to bring the levels down slowly otherwise I'd be very unwell dropping to a near-normal level, to begin with.. suspect for me it means I;m a little way off needing to worry about them but not sure. It seems its this DKA thing they're more worried about. More I read, so am I!

TashT1 said:

Things are still a bit unpredictable but that scares me less now & I know how to deal with things better. I’m in the honeymoon period & still producing insulin, you’ll come across it at some point.

26 is obviously a high reading but not unusual at this stage, see what it’s like in 2hrs after your meal & keep an eye on DKA symptoms. Did they give you any ketone test strips with your monitor? 2 days after diagnosis I went over 30, some readings just said HI. The hospital team adjusted my dose & things got better.

The other thing I did was lower the amount of carbs I ate. You need to be careful not to drop levels too quickly because that can be dangerous too but my novarapid dose was fixed at 10u so I played around with eating lower carbs amounts get lower readings. I use the carbs & Cals app to track what I’m eating. Practice recording your normal carb intake for a few days & see how these match up with your levels. Then you can make a more informed decisions about what to eat.

If your hungry build up a stock of low carb/ carb free snacks that will not require an insulin response. Anything under 10g of carbs won’t require insulin. For example pork scratchings, any meat or salami, most cheeses, skips crisps, small amount of peanuts, cucumber.

As type 1’s we don’t really need to give any foods up as long as we cover it with insulin but knowing how much insulin to take is the tricky bit. Overtime you will learn how to carb count & dose but at the moment your teams focus will rightly be on safely bringing those levels down.

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Hi Tash, glad you're still producing some, I have no idea if I am! It is a very complex and unpredictable condition it seems! Feeling slightly "fragile" today, not emotionally, just that I could break quite easily if I'm not careful with what I'm doing - best analogy I can think of is it feels like running across two roads. One is quiet, no traffic and relatively risk free, the other has traffic and you could get squashed if not careful!

I'm supposed to up my daily dose from 10 to 12 after four days, nurse said it would be too much of a shock to my system to go with high dosage to begin with but that it'll have to increase over time.

The 10g of carbs info is interesting and I like your examples (all except cucumber - yuck haha!)

I'm taking the positive view on this - it will force me to exercise more and eat better. When everything is under control I think it may turn out to be a positive thing. Gotta look on the bright side!