Is 'Probably Type2' an acceptable diagnosis?

[MancboyChris]

Hi all. I posted on here at new year.
I was admitted to hospital with 3+ Ketones and 26 bloods. IV insulin to bring bloods down and told at the time, not sure which type and was discharged with Insulin.

I was meant to see the specialist again but three times cancelled.

In August, I had my first Hba1c test, this was 31. My GP and the practice nurse were confused. The nurse sent a letter to the specialist, and 10 months later I get a letter.
Based on my BMI, I am probably type two diabetic.

I no longer use the insulin and have told my GP. (still prescribed)

I understand that on discharge from hospital, the safest route was probably insulin, but to get the letter ten months later (with no further tests) I get "Probably" type 2.

I get that am very most likely T2 as my sugars have been fine <8.5 majority of the time I finger check after food. (I hardly check that anymore) but that Hba1c 1 result shown me I'd been managing well without taking insulin (since around May)

I'd just like a proper diagnosis, for travel insurance, driving (as they haven't changed treatment) etc.

Sorry for the long post.

 

[TashT1]

It’s not one that I would accept. I’d be wanting to know what caused the spike in BG at diagnosis & ketones.

Did they do antibody tests & c-peptide at diagnosis? You should be able to get an endo consultation over the phone & with it a proper explanation of how they came to that conclusion.

I generally learn a lot more from quizzing my consultant than any letter I receive or my nurse.

If your managing well without insulin then I guess the main advantage of a solid diagnosis is peace of mind & knowing what dietary path to take.

If you want a second opinion all hospitals have a PALs service that links you to another consultant. Even with covid you can get telephone appointments & tests done.

 

[MancboyChris]

I was told they did the T1 antibody test while I was in hospital, which were negative. I can't get an appointment with the consultant phone or in person. It does give me some sense of relief that I can seem to control my bloods without any meds right now, though have cut Carb intake by alot which can't be a bad thing.

My other query is the hba1c being 31. They did not test at hospital but I have no idea if hba1c could drop from from whatever it was to 31 in maybe 6 months.

I might need to contact pals to see if they can offer any advice or help, as you say a solid diagnosis is what I'm after.

 

[AloeSvea]

My understanding of hospitals worldwide is when it comes to accident and emergency admissions, even when they do tests, is that they get you in and they get you out as quickly as possible (ensuring you are alive of course!) and close the case with great relief. (My sister the nurse told me this - it had never occured to me before, but there you are.) Then it is up to you and your GP/local medical practice.

Your GP should be the one to give you a proper diagnosis? No? Give you another HBA1c (absolutely!), to follow up on that perfectly healthy 31 (assuming that 31 is without insulin?), give you a spot blood glucose test at the same time which is pretty standard, I would ask for a C-Peptide to check your own insulin production and then have the GP explain it, and then if puzzling results - send you to a specialist at the hospital - then you have a team of endocrinologists and are in the system...

 

[Daibell]

Hi. Sadly there is no definitive test for T2 so often it's a guess. The most useful test is the C-Peptide as it shows the level of insulin you are producing. This will normally be high for T2 as the body has a lot of insulin but can't use it. If it's low it's T1 as the beta cells aren't producing much. Yes, your sudden HBA1C drop is very strange.

 

[ert]

Ketones of 3 or slightly higher aren't dangerous (in the fat-burning zone), but your blood sugars were certainly high at 26 mmol/l. This could have been due to an illness or infection, supported by your first HbA1c is being normal and non-diabetic and not T2 (anymore if you ever were.) I hope you continue to stay well.

 

[KK123]

Ketones of 3 or slightly higher aren't dangerous (in the fat-burning zone), but your blood sugars were certainly high at 26 mmol/l. This could have been due to an illness or infection, supported by your first HbA1c is being normal and non-diabetic and not T2 (anymore if you ever were.) I hope you continue to stay well.

I was told that ketones of over 3 accompanied by a high glucose level (over 14) were dangerous and medical help should be sought immediately. They used the mantra 'Over 3, A&E'. They explained that this was because they could easily rise higher extremely quickly and like sepsis, could finish you off within hours or less. Once they reached 3 they said you were at a very high risk of your body shutting down. I get that dietary ketones are somewhat different in other circumstances but I don't think it's good to leave people under the impression that ketones of 3 or more ALONG with a glucose level of 26 is somehow not an emergency or not dangerous.

 

[DCUKMod]

@MancboyChris - Unfortunately, T2 seems to be the diagnosis of choice, where there is doubt. This will also have been influenced by your ability to significantly improve your A1c - although this is seen fairly regularly on here, when a newly diagnosed person's pancreas seems to get a bit of a rest, by injecting insulin, and perk up again. Well, that's how I see it in my head!

A decent percentage of T1sare sero-negative, meaning they don't return antibodies in their tests. Testing negative for antibodies simply means there are no antibodies.

Frustratingly, we see a steady stream of those diagnosed T2, then over time - often years, their LADA or other T1-style variant comes to the fore. Sadly, sometimes, it seems patience is the key.

I would urge you to seek a more definitive diagnosis. Whether you can achieve that right now might not be so clear, but I know I'd want it, but I also know from another condition that these things can sometimes take not just month, but years to become clearer.

In the meantime, keep doing what you're doing to stay in the healthier space, but most important, keep a decent eye on those blood sugar levels and if they start creeping up, seek investigations.

 

[AloeSvea]

Hi. Sadly there is no definitive test for T2 so often it's a guess. The most useful test is the C-Peptide as it shows the level of insulin you are producing. This will normally be high for T2 as the body has a lot of insulin but can't use it. If it's low it's T1 as the beta cells aren't producing much. Yes, your sudden HBA1C drop is very strange.

Did you mean 'No definitive test for T1'?.

The HBA1c and the Oral Glucose Tolerance Test are pretty definitive aren't they? For T2? (But I think you meant T1....?)