Newly diagnosed so a hello

[dannybgoode]

So this was all completely unexpected. No symptoms, fit and healthy (ran a marathon in a respectable time end of September for eg) and otherwise in fine form.

However, I got invited for my first officially old persons health check (I'm 48), booked the appointment like a good boy and as part of that got invited for a routine blood test.

Went for that on Tuesday and on Wednesday my GP called me in a blind panic as my blood sugar was through the roof. Repeated the test Thursday to make sure it wasn't an error and got the same result.

Hba1c was 120 and glucose > 28.

So yesterday was spent at an emergency outpatients appointment at the hospital and they gave me a suspected Type 1 diabetic diagnosis (they are running the differential test etc to check so we know for sure. Should have the results Monday or Tuesday).

Past autoimmune condition (ulcerative colitis) and current health etc lead them to the Type 1 suspicion though.

Came away from that having been trained in how to use the insulin pen, blood monitor etc and a full monitoring and insulin regime.

So pure luck of timing and they told me had I not had that blood test, in a handful of weeks I could have been very seriously ill. As things stand I had zero symptoms and hopefully they can bring it under control nice and steadily.

All a bit of a blur at the moment as I got so much information yesterday. My wife is a nurse and she was with me a she was struggling to take it all in as well.

Just a bit daunting trying to remember what I need to do well, explaining to my 12yo the basics of what to do in an emergency without scaring him, managing work (won't be too much of an issue as I have the best boss in the world) etc!

Hats off the the diabetic team here though. They've been utterly brilliant.

 

[Inka]

Welcome @dannybgoode 🙂 It’s good they’re doing tests to confirm your diabetes type. Type 1 does come on suddenly. There’s a tipping point where your remaining beta cells can no longer control your blood sugar and then the diabetes becomes apparent. When I was diagnosed, I felt rough but not hideously ill. However, I was on the verge of DKA and much more ill than I thought. It wasn’t until I got the insulin that I realised how unwell I’d been feeling.

What insulins are you on?

If your Type 1 is confirmed, there are a couple of books often recommended for Type 1s on this forum:

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - great for adults too)

Think Like A Pancreas is American but I liked the chatty style and it contains some great information, as does the Ragnar Hanas book.

 

[dannybgoode]

Brill - thank you. They offered me both mixed or intensive refined but strongly recommended the latter.

So I'm on Novorapid and Levemir. Just 5 units for now to start getting things under control over the weekend.

Luckily my ketones were 0.2 so very lucky to have had chance routine bloods when I did.

The team have been utterly brilliant too. Even created a special appointment for me as they didn't technically have any slots until Monday.

They are certain enough it is Type 1 they almost gave me a Libre there and then but decided that I need to get used to the Accu-chek anyway and just in case it comes back a T2 and they have to take it back off me they decided to wait until next week when the differential results will be in.

I'll check those books out if it is T1. Line reading up on stuff 🙂

 

[Eternal422]

Welcome @dannybgoode - I think we met on FB Amateur Radio UK group and I recommended this forum?

I can definitely recommend Gary Scheiner’s book that @Inka suggested. It’s written really well and makes it easy to understand how to manage your insulin doses.

I presume one of your blood tests was HbA1c, an indication of average blood glucose levels over the last 3 months? Assuming this is high they would want to gradually reduce your blood glucose levels as a rapid change can cause temporary disturbances to eyesight as well as making you feel “off”.

I’m on Levemir and Novorapid too, for me it’s a good combination and works well for me. Hopefully you’ll get a CGM such as Libre or Dexcom soon which is a game changer, showing you real-time blood glucose readings as well as meaning you won’t have to do fingerprick testing all the time!

Take care and keep asking questions, there is so much help on here from the folks on the forum!

 

[dannybgoode]

Yep that's me. Yes Hba1c was 120! And yes, just a low dose at the moment to bring down to less critical levels and then they'll take it from there.

Assuming T1 then I'll definitely get a CGM. Nurse almost gave me one there and then but decided it was more useful for me to get used to the finger prick instead.

 

[Eternal422]

Sounds like they’ve got you and will get you sorted! I peaked at an HbA1c of 144 before going onto insulin which quickly got things in check. The diabetes specialist nurse (DSN) said to me at the time that when my levels got back into the normal range I would then realise how bad I had been - feeling tired all the time, no energy, unquenchable thirst, going to the loo all the time! She was right! Once my levels were in the normal range I felt so much better!

 

[Inka]

Novorapid and Levemir are commonly used analogue insulins and the two recommended by the NHS, I think. There’s nothing wrong with mixed insulin (and it often contains an analogue insulin anyway) except the proportions of the two insulins might not suit some people. More than that, it requires quite a regimented routine. It was all we used in the past.

However, the regime you’ve been put on - known as basal/bolus or MDI (multiple daily injections) is most common by far now. The basal insulin is Levemir in your case, and the bolus is Novorapid. The basal insulin works slowly over a number of hours to keep the blood sugar controlled in the absence of food. The bolus insulin is a rapid insulin that’s injected before meals to control the glucose rise from eating. That’s a very simple explanation, but hopefully helpful.

The recommended diet for Type 1s is the same healthy diet recommended for everyone else. Any high sugars aren’t because a person ate the ‘wrong’ food but almost always due to a problem with the insulin - wrong dose, wrong timing, etc. Your blood sugars will probably be a bit high still but that’s normal so soon after diagnosis. Better a little high than hypo.

Speaking of hypos, do make sure you get plenty of hypo treatments in and take them with you when you go out even if you’re only out briefly. It takes a while to get your head round Type 1 and it can be overwhelming in the early days, but I promise it gradually gets easier @dannybgoode

 

[dannybgoode]

@eternal - Yep that's me. Yes Hba1c was 120! And yes, just a low dose at the moment to bring down to less critical levels and then they'll take it from there.

Assuming T1 then I'll definitely get a CGM. Nurse almost gave me one there and then.

@Inka - yep, got a stash of various hypo 'treatments' for the car, work, home, out and about.

The nurse was *very* thorough with everything. Driving, DVLA notification (done), hypo regimes, what work need to know etc. She was brilliant. Just a lot to take in in 2 hours!

Just at my son's power lifting training and his coach has given me some good info regarding training etc (I'm a distance runner) so that's been useful.

 

[SimonP]

Brill - thank you. They offered me both mixed or intensive refined but strongly recommended the latter.

So I'm on Novorapid and Levemir. Just 5 units for now to start getting things under control over the weekend.

Good, MDI basal/bolus is much more useful.

Just at my son's power lifting training and his coach has given me some good info regarding training etc (I'm a distance runner) so that's been useful.

Good to hear, there's also quite a lot of discussion on the forum about endurance exercise. Will be interesting to hear what you find works for you (we're all at least a bit different) to add to the hive mind 🙂

 

[mashedupmatt]

Hi @dannybgoode and welcome to the forum - sounds like your routine health check was a good thing as an HbA1c of 120 is a high number and it was caught at the right time - although my number was not as high, I was also diagnosed following a routine blood test for something else (auto-immune too!) - it also sounds like your healthcare team have been fantastic - which is brilliant to hear, and that they are so knowledgeable about the condition (sadly this often is not the case) - I ditto everything has already said on here but I know that is a great deal to take in and learn (I'm only 2 1/2 years in myself) - glad you found the forum and please don't be afraid to ask any questions you may have, however "silly" or trivial they may seem - we are all here to support each other - let us know how you get on when you receive your test result and get a succinct diagnosis

 

[everydayupsanddowns]

They are certain enough it is Type 1 they almost gave me a Libre there and then but decided that I need to get used to the Accu-chek anyway and just in case it comes back a T2 and they have to take it back off me they decided to wait until next week when the differential results will be in.

They wouldn’t have to take Libre off you as a T2, providing you were on a insulin and had been advised to check up to 8 times a day.

But they have unwittingly revealed one of the frustrating health inequalities of diabetes. Because T2 can be such a broad category, with so many people mistakenly initially given the classification purely based on age, the evidence-based treatment of T2 is usually based on classic cases (insulin resistance, weight loss, chance of remission) and can miss the nuance of the lived experience of many.

By the time you get to MDI, dose adjustment, and carb counting I really can’t see the argument of denying access to appropriate technologies - but that’s not the way health economics and PICO (population, intervention, comparator, outcomes) evidence sifting works.

It’s a recurring frustration for many T2s here, who have to ‘fight the system’ for equipment that would immediately be offered to someone with a different classification without question.

In your shoes, I’d be stressing to the clinic that what you want is the classification that offers you the best chance of optimal outcomes long-term, by access to technologies and meds that are most likely to help you manage your diabetes well. And if some of the clinical factors and test results put you in an uncertain zone between 2 classifications, I’d stick with T1 myself.

 

[dannybgoode]

Thanks Everyday - yes, my GP phoned me and just told me it was Type 2 and was about to go down the Metformin route. I pushed back and asked about trying diet control etc and it was only then she spoke to the reg and it was he who insisted on seeing me.

My medical history etc suggested to him almost certainly T1 and I'm just pleased I did push the GP as I never knew that could be the case. Hence why he wanted me in clinic asap.

If they couldn't do the differential tests etc then they'd put me down as T1 for sure but having confirmation helps I guess.

Clinic were brilliant, they are very happy to recommend a CGM for me regardless of Type however they felt, as I needed to get used to finger pricks anyway and because there may be a lead time to get Libre signed off if on the off chance I come back as T2, this was the better option at least over the weekend.

The DSN though seems a huge fan of CGMs and would give them to everyone if she could so she'll push for it for me anyway.

We'll see. My weight is only a handful of kg high (89kg and 187cm) so BMI is a shade over the basic 25 and I'm extremely fit cardiovascular-wise.

And clinic have said I'll be insulin controlled regardless too so we'll see how it so pads out.

Yes, I fully understand the frustrations of having to fight for stuff just because you're in a slightly different category but with the same higher level needs. I understand how tight funding is but for something like this it shouldn't matter.

The good news is that my initial target of getting my BG <20 but not getting lower too quickly over the weekend is working out and then next week we start work really getting to grips with things.

At the moment I'm just on a flat 5 units of both bolus and basal with instructions to reduce that of I start hitting hypo territory which they feel unlikely.

 

[Zepherine]

I was treated for Type 2 when first diagnosed 20 odd years ago. I was also the same age as you, 48. Won’t go into how rubbish my encounter was with GP, but when I did get diagnosed as Type1 everything changed overnight. Hopefully you can soon cope with multiple daily injections so you are tailoring the insulin to what you eat instead of the insulin dictating.
I also found the Dafne course really helpful while still injecting. I have been on a pump for years now so that again vastly improves quality of life as does Libre.
Good luck with negotiating the information you will have to try and absorb. It’s not easy at first but gets easier and you sound like you have made great strides so far.

 

[SimonP]

Clinic were brilliant, they are very happy to recommend a CGM for me regardless of Type however they felt, as I needed to get used to finger pricks anyway and because there may be a lead time to get Libre signed off if on the off chance I come back as T2, this was the better option at least over the weekend.

There's also the not-infrequent cases of the libre2 failing to produce sensible values and needing to be changed over (always when you actually need to know your BG), double checking hypos (recommended in all cases), as well as performing occasional checks (I do 2x day) that the sensor's calibration has not decided to wander off somewhere.

My current libre2 is running with an offset of 4.5mmol/l (it's reading low, so hypo alarms aren't very useful) I would change it except I only put it on a couple of days ago having had one replaced due to a Bluetooth failure. I'm not sure the previous arm can take another sensor just yet!

fwiw XDrip+ is just about making the sensor useful, otherwise I'd have had to swap it - the offset is non-linear, and gets smaller at low BG values, so it is possible to get a roughly working system using one of the experimental calibration routines that allows a larger gradient.

 

[trophywench]

And it is very important that if you ever get a surprising result from a CGM, the manufacturers tell you to fingerprick test anyway!
Which AccuChek meter do you have?

 

[dannybgoode]

And it is very important that if you ever get a surprising result from a CGM, the manufacturers tell you to fingerprick test anyway!
Which AccuChek meter do you have?

Instant 973. Again, the DSN was very thorough and made sure I knew how to use it effectively.

Readings seem sensible. BG is still very high but that is by design so it doesn't drop too quickly at first.

But it is before target - at the moment just until Monday/Tuesday when the final bloods tests are back <20 is where I need to be at and my average is 17 so far and down from >28.