Uncertainty over T1 or T2

[Eternal422]

Thanks @PattiEvans and @Robin - I didn’t think an average T1’s insulin requirements was particularly different to what I take, which is exactly why the hospital DSNs treat me as T1.

@Inka - possibly the once daily Levemir is what is causing doubt/thinking I am still producing some insulin and therefore T2. In which case the C Peptide will confirm or deny this.

Just to add more confusion to this diabetes type debate I read an Oxford University paper that basically says in T2 high levels of glucose in the blood can “turn off” beta cells, thus stopping endogenous insulin production. If this is the case then no endogenous insulin can mean either T1 or T2, the only differential then being that T1 has no beta cells (having being destroyed by antibodies, I.e. an autoimmune condition) whereas T2 has “switched off” beta cells. Either way the treatment is to be on exogenous insulin. I realise that T2s who still produce insulin can be treated with various oral agents to stimulate insulin production and may also have insulin resistance, so there are differences between the two types.

Wouldn’t it be great if the human body could give a simple fault code to indicate exactly what is going on?

 

[Eternal422]

Could it be weight related (sorry eternal I’ve no idea if you’re average / heavy / light) but insulin doses are relative to weight, I was told mine are too low to be likely type 2 as part of the decision letter. Whilst I take more insulin than you I also weigh a lot more, so my dose per kilo isn’t high.

Good point, I am 87kg, so my TDD / kg is around 0.6U. The DSNs reckon that the amount I take is typical for T1, but I don’t have any definitive figures.

I know I just need to wait for the C Peptide results, sadly my mind just keeps on churning!

 

[Tdm]

Just got a copy of the letter sent by the consultant to my GP following my appointment. It basically repeats the medical history I gave along with the blood tests that she ordered but ends with a paragraph that says :

His diabetes control is excellent on relatively small amounts of insulin. At present he takes Levemir once daily therefore increasing my suspicion that he may have endogenous production of insulin and therefore Type 2 diabetes.

I take 28U Levemir at night and 1U:8g CHO Novorapid. Interestingly I find I need to add corrections outside of eating in the evening, so possibly the Levemir is not sufficient for the whole 24 hours (I probably need to do a further basal test to confirm). From what the DSNs have said, the amount of insulin I take is consistent with many of their T1 patients so I’m a bit surprised at the consultant’s statement. My TDD insulin averages around 55, obviously depending on how many carbs I consume.

I know I need to wait for the C Peptide test and it sounds like if the results are low then the consultant will at least consider T1 if it shows I have little or no endogenous insulin. But that last paragraph made me worry a little bit more.

My average total daily insulin is about 18.

 

[rebrascora]

My TDD is somewhere between 30 and 45u (Currently 18-20u Levemir) plus whatever else I need for food/corrections including, like @Robin, a 2u "add on" of Fiasp in the morning to cover FOTF which is technically helping out my morning Levemir in the form of a turbo boost.
Thankfully I had a C-pep shortly after diagnosis which was borderline normal/low and I have needed to significantly increase Levemir doses since then by pretty much a factor of 3 as I was started on 6 or 7 units of Levemir initially and it increased in 3 quite distinct phases over the first 2 years before it levelled out where it is now.

I think, even if you are still producing insulin now, it doesn't mean you are Type 2 as the Joslin Institute study showed that Type 1s with 40, 50 and 60 years with the condition, still produced some endogenous insulin.

I think the wording of that last sentence if the consultant's letter is poor because it suggests they have already made their mind up. No one wants to make their professional opinion public and then have to back down from it and say they were wrong and unfortunately the Type 1 tests are not by any means, always clear cut and are open to interpretation.
I certainly don't mean to fuel your anxiety on this and I really feel for you as I can totally understand how unsettling it is, but I think you might need to be prepared to push for a second opinion and certainly be pushy about wanting a full explanation of how this consultant came to their decision, if they say it is Type 2.

 

[Eternal422]

@rebrascora - thank you for your comments and thoughts. The consultant did say “let’s wait until we get the C Peptide results and then go from there”, so I’m holding out that her decision will be unbiased rather than following with a comment she made during the consultation that she didn’t think this is T1 (based on no weight loss nor DKA at diagnosis).

If she does say it is T2, then I’m not sure whether getting a second opinion at the same hospital would be truly unbiased? I would certainly ask for a full explanation from her, but wonder whether if it comes to this whether I should be looking at a private consult with an endocrinologist outside the area? Might be worth the £300+ to get an unbiased second opinion? If I can go armed with medical history and these blood test results hopefully one consult would be enough. Not sure how the NHS would respond to that though and whether they would accept a second opinion from someone outside of the ICB?

 

[Lucyr]

If she does say it is T2, then I’m not sure whether getting a second opinion at the same hospital would be truly unbiased? I would certainly ask for a full explanation from her, but wonder whether if it comes to this whether I should be looking at a private consult with an endocrinologist outside the area? Might be worth the £300+ to get an unbiased second opinion? If I can go armed with medical history and these blood test results hopefully one consult would be enough. Not sure how the NHS would respond to that though and whether they would accept a second opinion from someone outside of the ICB?

I can’t imagine the NHS taking a private doctors opinion that it’s T1 and changing the diagnosis back if their decision is it’s T2. Just wait and see. If the cpeptide shows you produce loads of insulin and are T2 then it might be you can manage diabetes with something other than insulin. If you don’t produce much insulin you’ll likely be classed T1