Type 1 or 2?!

[Joanneclairebarnes]

Any thoughts….I was initially diagnosed Type 1 aged 19. Well controlled and didn’t see a consultant regularly until became pregnant at 30, due to low insulin requirements at time (thought definitely needing it) i was test for MODY, negative. Also had cpeptide test which indicated insulin production.
i have since then been labelled as "Likely Type 2". Tried coming off insulin and just having metformin, empagliflozin and gliclazide but this didn't control my glucose at all so back on insulin. I take 10 lantus, and 8-10 novorapid with evening meal( plus minimal novorapid at lunch but tend to eat low carb)

Most recently, consultant said that although i dont fit Type2 profile, test have proven I'm not type 1. Managed to get them to repeat c-peptide. Results attached. There is note saying "low for insulin level"

Im going to speak to them asap of course but any thoughts or ideas?! I was most recently told its either an unknown type of diabetes, or an underlying condition causing the symptoms. I just hate the not knowing!!

 

[Lucyr]

It’s a bit odd that your cpeptide was tested unstimulated (ie with normal bg not high bg), but you produce more insulin than me and I’m “undefined type” also. My result though because it was based on a high bg, was that I could not come off insulin.

For a fasting blood test (guessing this column most relevant as bg not high at the time at 7.5) then a cpeptide above 250 is substantial insulin production and yours was 288

For context my stimulated cpeptide (bg 18) was 265 and for a stimulated test then a cpeptide above 600 would be substantial insulin production and 200-600 is indeterminate

C-Peptide Exeter Clinical Laboratory International

www.exeterlaboratory.com

 

[Joanneclairebarnes]

It wasn’t fasting, was told to eat a carby breakfast, so had a couple of slices of toast without fast acting insulin. Generally my long acting keeps my glucose quite well controlled in the morning and during the day.

Thank you though I was struggling to interpret it, going to call and try to speak to someone today.

 

[Lucyr]

It wasn’t fasting, was told to eat a carby breakfast, so had a couple of slices of toast without fast acting insulin. Generally my long acting keeps my glucose quite well controlled in the morning and during the day.

Thank you though I was struggling to interpret it, going to call and try to speak to someone today.

Ah okay, so stimulated but the timing was a bit off as your body had already made the insulin to cover the toast and got your bg back down to 7.5 before the test. The piece of toast without fast acting insulin put me up to 18 for the test which is what’s expected if you aren’t producing enough insulin.

Perhaps you’ll be advised to keep a small amount of basal but stop rapid if your pancreas produces enough insulin to deal with 2 pieces of toast fine.

 

[Joanneclairebarnes]

Mine would be the same in the evening but in the morning I don’t seem to need it- maybe to do with activity. Take my long acting in the evening and am trialling upping this and reducing fast acting gradually.

Thank you for your replies

 

[rebrascora]

You case is really interesting, but I can understand it being really frustrating and unsettling to have your diagnosis queried after so long.
Can you tell us a bit about how your diagnosis came about in the first place. Did you end up with DKA? Was it a sudden onset of symptoms or picked up through a routine blood test?
From your profile, would I be right in assuming you are female and if so, do you have PCOS?

The fact that your body can cope with 2 slices of toast in the morning is also really interesting and yet you need quite a significant dose of NR in the evening.... which is the opposite of what you would normally expect as most of us are insulin resistant in the morning and need more insulin, but less in the evening unless we have a large carb rich meal but you mention that you are eating low carb.
If you take your Lantus in the evening, then I am just wondering if it is running out the following evening resulting in you needing more bolus insulin to cover the deficit plus food but perhaps the Lantus is covering some of breakfast?

Do you have Libre or other CGM on prescription? Just wondering what your graphs look like?

When you tried going without insulin, with just oral meds, were you low carb then and if so, how low carb?

 

[Joanneclairebarnes]

You case is really interesting, but I can understand it being really frustrating and unsettling to have your diagnosis queried after so long.
Can you tell us a bit about how your diagnosis came about in the first place. Did you end up with DKA? Was it a sudden onset of symptoms or picked up through a routine blood test?
From your profile, would I be right in assuming you are female and if so, do you have PCOS?

The fact that your body can cope with 2 slices of toast in the morning is also really interesting and yet you need quite a significant dose of NR in the evening.... which is the opposite of what you would normally expect as most of us are insulin resistant in the morning and need more insulin, but less in the evening unless we have a large carb rich meal but you mention that you are eating low carb.
If you take your Lantus in the evening, then I am just wondering if it is running out the following evening resulting in you needing more bolus insulin to cover the deficit plus food but perhaps the Lantus is covering some of breakfast?

Do you have Libre or other CGM on prescription? Just wondering what your graphs look like?

When you tried going without insulin, with just oral meds, were you low carb then and if so, how low carb?

Yes, that is exactly how I feel, especially as I’ve always controlled it so well with insulin.

No DKA at onset. I had the typical extreme thirst, needing the toilet (especially at night) and lost over a stone, I was only about 7st when diagnosed which is why I am really querying type 2! Generally felt rubbish and had had a few urine infections and it was picked up when I went to the doctors for this. I’d only had symptoms a month or so and didn’t really think into too much.

I was taking my Lantus in the evening, but changed to lunch time but it hasn’t made much difference. I’ll have something like a jacket potato at 12ish and my glucose will reach 12-15 but come back to 5-6 by about 4pm. In the evening, I do tend to eat more carb heavy meals and have reduced from around 10 units to 6/8 depending on what I’m having. I did used to notice my glucose would rise in the morning, but not so much since increasing lantus.

I have libre- will attach a couple of screen shots. Today I have just had a banana for breakfast. It’s quite ‘zigzaggy’ all of the time even at night, not sure if that’s normal!

When I tried oral meds I was eating normally as advised not to go low carb. My glucose would rise to around 18-20 post meals and not come down again. (Apart from in the morning, but I don’t tend to have 2 slices of toast daily that was just for the c peptide test)

To be honest, I didn’t go insulin free for long as I still had insulin I couldn’t bear seeing my glucose being so high all the time.

 

[Inka]

You’ve mentioned C Peptide but did you also have the Type 1 antibodies test @Joanneclairebarnes ?

 

[Joanneclairebarnes]

Yep a few years ago. It showed no antibodies but I have heard that they can not always show up when you’ve been diagnosed for a long time, not sure how accurate that is…

 

[Inka]

Yep a few years ago. It showed no antibodies but I have heard that they can not always show up when you’ve been diagnosed for a long time, not sure how accurate that is…

I think it depends. I still had antibodies more than 20 years after diagnosis.

I can understand how frustrating the not knowing is. My only other thought is have they looked at your pancreas by scanning?

Your insulin doses aren’t massive. What ratio are you using for your evening meal (ie 1 unit of insulin cover show many grams of carbs for you)?

 

[Joanneclairebarnes]

I think it depends. I still had antibodies more than 20 years after diagnosis.

I can understand how frustrating the not knowing is. My only other thought is have they looked at your pancreas by scanning?

Your insulin doses aren’t massive. What ratio are you using for your evening meal (ie 1 unit of insulin cover show many grams of carbs for you)?

I’ve asked for a call back from my consultant following the most recent results so will ask about pancreas scanning.

I’m not great at carb counting I tend to estimate but around 1:12

 

[Lucyr]

Yep a few years ago. It showed no antibodies but I have heard that they can not always show up when you’ve been diagnosed for a long time, not sure how accurate that is…

I had antibodies 15 years after a type 2 diagnosis but they were only mildly positive so it was inconclusive

 

[everydayupsanddowns]

It’s an interesting case, but my (unqualified) opinion is that you show a lot more clinical factors relating to a variant / sub type of T1 than of T2.

You are quite right that autoantibodies are often not present many years after diagnosis - so no antibodies is not conclusive.

Many many T1s retain some insulin production. In the Joslin Institute in the US there are medallists with 30, 40, or 50 years of T1 under their belts who still have measurable cPeptide / insulin production.

For me, the biggest question about getting the correct classification for you is the one which best fits your atypical presentation, and gives you access to the most appropriate treatment options.

You may not be classic T1, but you have demonstrated that you do still need exogenous insulin, and you surely aren’t classic T2 (no extra weight, no obvious visceral fat, no insulin resistance, no overproduction of insulin).

So I think a fair question for your consultant is what is the benefit to you of reclassification.

Would it help you more to:

• go on the NHS Soup and Shake diet (designed for T2s and not offered to T1s) OR
• go on an insulin pump - very small and flexible insulin dose availability (but not offered to T2s)

What treatment options suit your atypical case best?

 

[Inka]

I’ve asked for a call back from my consultant following the most recent results so will ask about pancreas scanning.

I’m not great at carb counting I tend to estimate but around 1:12

When I was first diagnosed, my blood sugar did similar to yours. I experimented with not taking insulin and I ate breakfast (no insulin) spiked to around 13 but, by lunchtime, had come down to 3.8. My consultant said this was my own insulin kicking in too late and a little too much. I only tried this a few times and, after seeing my consultant, took my insulin as I should.

I think you sound possibly more like a slower onset Type 1, but it’s not clear cut at all and I can see why there’s uncertainty about your type.

Sorry - another question: did you have ketones at diagnosis?

 

[Joanneclairebarnes]

When I was first diagnosed, my blood sugar did similar to yours. I experimented with not taking insulin and I ate breakfast (no insulin) spiked to around 13 but, by lunchtime, had come down to 3.8. My consultant said this was my own insulin kicking in too late and a little too much. I only tried this a few times and, after seeing my consultant, took my insulin as I should.

I think you sound possibly more like a slower onset Type 1, but it’s not clear cut at all and I can see why there’s uncertainty about your type.

Sorry - another question: did you have ketones at diagnosis?

This is what my gut tells me too. It’s just strange as I was first diagnosed 16 years ago.

I did have ketones when diagnosed and recently had elevated ketones (up to 1.5) when unwell recently. That was the only time that being unwell has really impacted glucose levels. But managed to keep it under control with additional insulin.

 

[Joanneclairebarnes]

It’s an interesting case, but my (unqualified) opinion is that you show a lot more clinical factors relating to a variant / sub type of T1 than of T2.

You are quite right that autoantibodies are often not present many years after diagnosis - so no antibodies is not conclusive.

Many many T1s retain some insulin production. In the Joslin Institute in the US there are medallists with 30, 40, or 50 years of T1 under their belts who still have measurable cPeptide / insulin production.

For me, the biggest question about getting the correct classification for you is the one which best fits your atypical presentation, and gives you access to the most appropriate treatment options.

You may not be classic T1, but you have demonstrated that you do still need exogenous insulin, and you surely aren’t classic T2 (no extra weight, no obvious visceral fat, no insulin resistance, no overproduction of insulin).

So I think a fair question for your consultant is what is the benefit to you of reclassification.

Would it help you more to:

• go on the NHS Soup and Shake diet (designed for T2s and not offered to T1s) OR
• go on an insulin pump - very small and flexible insulin dose availability (but not offered to T2s)

What treatment options suit your atypical case best?

Thank you. Last time I spoke to my consultant, I said that I’m finding it really hard to accept that I’m not Type 1 and that’s why the cpeptide was repeated.

I have queried a pump, but was told to wait for the test results and I assumed I wouldn’t be eligible being well controlled and now being labelled “likely type 2”.

It’s just so frustrating as I’m always seen by a different person with a different opinion. If anyone could point me in the direction of some kind of specialist in this that would be amazing!!

 

[Lucyr]

I have queried a pump, but was told to wait for the test results and I assumed I wouldn’t be eligible being well controlled and now being labelled “likely type 2”.

You’re probably correct, I’ve been told no pump since not a clear type 1 too, even though they’ve also said my insulin production is low enough that I’d have to stay on insulin permanently

 

[everydayupsanddowns]

Thank you. Last time I spoke to my consultant, I said that I’m finding it really hard to accept that I’m not Type 1

I find it hard to believe you aren’t more T1 than anything else too!

I can’t see any of the classic T2 markers in what you have described - eg insulin resistance (higher than normal cPep), excess weight / obesity, visceral fat around organs, glucose responds to oral meds. You don’t seem to have any of that!