Frustrated and upset

So, after many months of not having a clear diagnosis, I had an appointment with my consultant today. The appointment was to get the results back from my MODY testing. Unsurprisingly the results were negative (which was suspected).

So my consultant said I have key factors for both T1 (young, healthy weight, active lifestyle) and T2 (negative antibodies) but in his opinion I am T2. Which I thought was shocking as I had prepared for a T1 diagnosis. At this stage I asked if I could reverse it.

He then proceeded to suggest that I could come off of my insulin and move to some other drugs in order to get my hba1c under 48.

Following this, He then asked to see my recent levels - which I showed him on the LibreView app. He then quickly said that actually I may never be able to come off of insulin as my levels are still too high and have large spikes (albeit much better levels than before). Which seems to be very contradicting.

He confirmed my insulin sensitivity (to what I inject) is normal - I’m not entirely sure what this means? Any ideas?

He also mentioned that my current long acting insulin (abasaglar) potentially needs to be changed to a different long acting. He said the reason is that for T1’s it doesn’t last the full 24 hours (which seems to be happening for me) and so I may need to change to another long acting which I take 2 times a day.

He then also told me that I need to go on the DAFNE course which is for T1’s to help with my basal bolus regime (again seems contradictory to what the appointment started with....).

My insulin ratios have also increased to try to avoid the large spikes I have when I eat my main meals. And that I now need to use the bolus calculator in the MySugr app - has anyone found this tool useful?

I have also been sent to have another c peptide test - which previously showed a low c peptide and high blood glucose.

He was unsure if I would be able to reverse the diabetes. And to me it seemed as though he was suggesting I wouldn’t be able to come off the insulin as I have such low pancreatic function.

He said a few years ago before tests were as advanced, I would be a T1. But for now I would not have a type and just be an insulin dependant diabetic. The focus is on getting normal levels rather than having a classification.

I just feel very confused by it all and in some ways I was hoping that my MODY tests would be positive so that I would at least have a diagnosis!

To be honest, the insulin has been working quite well and I have had minimal hypos and my levels are significantly better than before. So I am happy to continue with the insulin but I just want a clear diagnosis!

Anyway rant now over!

Any suggestions welcomed on my 2 questions above.

Have a great bank holiday weekend everyone!

bulkbiker said:

In your shoes I'd be asking for a second opinion as he seems a tad confused.

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I am just so confused!! I think it’s clear I don’t produce much insulin (from my c peptide test) previously when I had t done, I fasted and my blood glucose was 13.5 and my c peptide was low.

He did say I am a very unusual case - if I am T2 then I want to reverse it. If I am T1 then I know I just need to manage the condition.

Jim Lahey said:

So you’re not [autoimmune] insulin deficient and you’re not insulin resistant??

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Well it seems I don’t have the T1 anti bodies, but it also seems that any insulin I do make is very little. And therefore, I don’t think I’m insulin resistant as he also said something about my insulin sensitivity is as expected.....

So confused

bulkbiker said:

Do you know what the actual C-Pep result was?
If you are producing little endogenous insulin then I'm guessing that you're gonna have to stay on it.

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I understand all labs use different measures for he c peptide test, but mine was LOW (in big capital letters) I think it was 0.4 but I cannot remember the specifics and I don’t have printout to hand. When I had that test done there were some suspicions that I may be T1 in the honeymoon (which my usual doctor thought).

I’m just feel very confused by it all.

I guess I will just have to go for another c peptide test (as the consultant requested) and see whether my results are different now.

Jim Lahey said:

My best guess is that you are insulin resistant and simultaneously insulin deficient (through fatty pancreas). In theory both of these could be reversed, but that process does not involve continued long term injection of exogenous insulin. That said, of course I am very much not qualified to make a diagnosis.

I agree with @bulkbiker in that, as you are describing events, it seems like your doctor is confused or misinformed, neither of which would be much of a surprise when it comes to the business of diabetes. Second opinion recommended.

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My question is though, if I am insulin deficient how is it possible to make more?

I am also concerned as on my initial diagnosis I had all the T1 symptoms - including losing a stone in weight in 3 weeks...

Jim Lahey said:

The pancreas can recover functionality as part of a dietary strategy that slowly burns away intra-organic fat. The same strategy is also effective at reducing hepatic (liver) and systemic (whole body) insulin resistance. Please note though that I’m am only explaining the theory based on best guesses. I am not making any suggestions or a diagnosis.

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Yes I appreciate that you cannot diagnose, and I really do thank you for taking the time to give some explanation .

I have a question - when I do weight exercise my levels sky rocket (go to about 18) is this something which happens in T2’s?

Antje77 said:

Young, healthy weight, active, low C-pept + high bg all sounds like T1, although not proof. The only thing suggesting it might be something else is that they haven't found antibodies. Which isn't proof at all, as the right antibodies aren't always found.
I fully agree with @bulkbiker , ask for a second opinion.
And as you make very little insulin, as proven by your low C-pept with high bg, I'd expect your diabetes to behave like T1, whatever the cause.

I'm a bit of the same, although older, overweight and lazy but my HCP is happy to fully treat me as a T1, even if we're not completely sure what type I have. Suits me fine too.

I hope you'll get your answers, but I think the most important part is managing your bg, whatever is needed for that. As far as I understand, those T2's having 'reversed' their diabetes have done so through eating low carb. There's no reason to eat a lot of carbs as a T1 either (unless when having a hypo), as long as you're confident to adjust your insulin doses.

If you learn to adjust dose to food, you can simply choose how many carbs you eat and adjust the dose.


Many people on abasaglar/Lantus split their doses for this reason. You could also ask about Tresiba, which works longer so once a day is enough.

Good luck and a big hug!

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Thanks for the time taken to post.

Yes, to me, I feel like the only thing in favour of a T2 diagnosis is the negative antibodies..... I am unsure how a young person who has always had a healthy diet and lifestyle can suddenly get a hba1c on diagnosis of 103 and be diagnosed as T2 - but perhaps I am just in denial (especially as my c peptide shows it as being low).

The doctor has said they will treat me as T1 for now in any event.

I just feel there are a lot of mixed messages!

Juicyj said:

Hi @SB.25 Weight training in type 1 can cause BG levels to soar from the liver producing glucose.

I have to admit reading through your posts it looks like type 1 to me but of course i'm not a doctor and would also urge you to seek a second opinion as your consultant sounds very confused, the important point to all of this is the control of your BG levels so if by taking insulin if you can maintain a healthy range then so be it.

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Thanks for the response. Does weight training have the same effect in those that are T2?

I did try to explain this to the consultant but he still seemed to be of the opinion that it is T2.