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Uncertainty over T1 or T2

9 years after my diagnosis I was negative for islet cell antibodies and GAD, there wasn’t the Zn8T then, so it will be interesting to see this time.
 
I am curious.
There appears to be a flurry (ok, one or two people) who have, for years, been receiving the treatment that suits them and allows them to manage their diabetes, then there is a question about their type.
Does anyone know why this is happening? Is it a cost saving exercise to see if they can offer something cheaper or an administrative exercise to update records or a consultant throwing their ego around without considering their patient?

I am very very very slightly concerned about myself because I have never taken GAD or c-peptide tests. I was diagnosed Type 1 because I was "too slim to be type 2" and been on insulin ever since which I do not want taken away when someone realises slim people can have type 2. I think my risks are low so I am mostly curious.
 
@helli - my hospital DSN referred me to the consultant to get T1 officially on my medical record so that I would be considered for any future technology such as HCL. Up until then they considered me as T1 based on insulin use, response to the insulin and effect of carbs. Originally, 22 years ago at age 42 the GP assumed T2 based on my age alone. When it became apparent that drugs had no benefit and my HbA1c continued to rise I was moved onto insulin some 5 years after initial diagnosis. Antibody tests were stated as being inconclusive so I was left as T2 but on MDI insulin.

I’m not sure there is a cost saving plan here, but you never know. I will fight any change to my treatment as I have now been on insulin for 17 years and more than happy with this and have seen a nice stable HbA1c with an improvement over the last 2 years since being on CGM.

I hope you don’t get caught up in any queries over type.
 
helli said:
There appears to be a flurry (ok, one or two people) who have, for years, been receiving the treatment that suits them and allows them to manage their diabetes, then there is a question about their type.
Does anyone know why this is happening?
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My suspicion is that as the new hybrid closed loop target is for this to become standard care in 5 years, there’s a push to make sure all the T1s are classified correctly. I have no evidence for this suspicion, but I believe that similar rationale is pushing more people through the carb counting course in my area at least.

As I’ve been diagnosed 16 years I fully expected to be the odd one out and that the other attendees were more recently diagnosed. Actually out of 7 of us I’m the most newly diagnosed, the rest were much longer term than me. At least half of them explicitly said they wanted a pump and carb counting course was the pre requisites. The cgm / pump / HCL tech stuff is definitely why I pushed to be tested and reclassified. There was only one person on the course who didn’t ever want a pump and was sent on it as he’d had the ambulance out for hypos.
 
Yes, that is my suspicion too @Lucyr. I don't know if it is general guidance from some central source within the NHS or individual department heads thinking ahead and looking to limit the potential costs when pumps do become more universally available to Type 1s..... and Type 3cs of course which seems to be a quite fast growing group.

I found DAFNE helpful but not interested in a pump and doubt it would achieve as good results as I do now and not sure how well it would work with my low carb way of eating anyway and very much doubt I could resist interfering/overriding when levels were going up. Plus I really couldn't be chewed with going back to proper carb counting. The way I manage it now is simply responding to my BG levels and just injecting insulin or eating carbs according to my Libre readings. Probably sounds really dodgy but makes life relatively easy for me without too much calculating or head space. High alarm is set at 8.2 and I inject 1-2 units when it goes off depending if I am going to be doing exercise or not and the arrow and have 1 or 2 JBs if the low alarm goes off at 4.5, depending upon the arrow. Mostly my meals keep me under 8.2, so no frequent high alarm irritation.
 
rebrascora said:
I found DAFNE helpful but not interested in a pump and doubt it would achieve as good results as I do now and not sure how well it would work with my low carb way of eating anyway and very much doubt I could resist interfering/overriding when levels were going up.
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If you don't have HCL, a pump would work the same as MDI. The huge benefits are that you can stretch your bolus over a longer period which would help with the protein bolus and take smaller doses. Given our basal experiment recently, you may find the ability to adjust your basal pattern beneficial.

However, I understand that pumps are not for everyone and many, as you keep mentioning, are not interested in one.
 
Inka said:
I assumed it was also something to do with the recent(ish) story about MODY, where they screened Type 1s and found they were actually MODY and could come off insulin. There was a BBC story about it.
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I was thinking that, I seem to remember there was a thread about it on here, and a Dutch study that @everydayupsanddowns was involved in, but it got very acrimonious because someone was claiming Type 1s could come off insulin, whereas I understood it to be reclassifying people who had been misdiagnosed.
 
helli said:
If you don't have HCL, a pump would work the same as MDI. The huge benefits are that you can stretch your bolus over a longer period which would help with the protein bolus and take smaller doses. Given our basal experiment recently, you may find the ability to adjust your basal pattern beneficial.

However, I understand that pumps are not for everyone and many, as you keep mentioning, are not interested in one.
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I think you may be misunderstanding me with that last sentence. I think most people probably want a pump and I suspect I am likely in a small minority who don't..... but maybe I have that wrong. I certainly don't mean to suggest that many people are like me in not wanting a pump.

I have other reasons including the cost, albeit to the NHS, when I simply don't need it and can manage fine with Libre. Plus the environmental impact. All the plastic and packaging with Libre is quite bad enough!

I am sure if I was struggling with the mental burden of my diabetes as I know many people do, it would be different, or if the practicalities of injecting more frequently were challenging due to work commitments etc but at the moment neither of those are issues for me, so I simply couldn't justify it to myself plus it just doesn't have any real appeal for me. I am pretty sure it isn't a phobia of technology because I love and trust my Libre and was keen to get that technology as soon as I became aware of it, but that enables me to manage my diabetes really well so I can't see the need for more.
 
Robin said:
I was thinking that, I seem to remember there was a thread about it on here, and a Dutch study that @everydayupsanddowns was involved in, but it got very acrimonious because someone was claiming Type 1s could come off insulin, whereas I understood it to be reclassifying people who had been misdiagnosed.
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I wasn’t involved in the study, but know someone at the clinic that was said to be “taking T1s of insulin” who confirmed that they would never to do this to someone with T1, and that it only happened where someone has been misclassified and actually had MODY that could be managed without insulin.
 
grovesy said:
I keep is seeing this mention of MODY, thought there were differnt types and they needed differnt treatments.
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They do, but most of the types are rarer than the main one/ones. The story I read was about picking up people assumed to be Type 1 who were actually MODY. Many of those people could stop insulin and take tablets instead - obviously a massive improvement for them.
 
Asked my DSN yesterday for the C Peptide results but was told that they are not back yet and can take up to 8 weeks! Must be due to delays in the lab I guess. So, more waiting . . .
 
It is usually 8 weeks for the antibody tests but C-Pep is usually back in about 2-3 weeks I think.
 
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.
 
Before pumping my TDD was around 45 and so why do they think this is such a low consumption of insulin?
 
Eternal422 said:
I take 28U Levemir at night and 1U:8g CHO Novorapid
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Blimey! I take 6 units of Levemir in the morning and 3 at night, with a couple of units of novorapid extra on the morning to counter the dawn rise, which I count as an 'extra' bit of basal. Then I’m 1:8 or 1:10. Nobody’s ever queried my Type 1 diagnosis on those amounts!
 
PattiEvans said:
Before pumping my TDD was around 45 and so why do they think this is such a low consumption of insulin?
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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.
 
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