TYPE 1/ TYPE 2 ..Exasperated!

[Sobeit]

I would really appreciate any input from those who have experienced similar of from those of you who have anything to say that I should hear or learn of.

I was diagnosed in my 40's with originally what they thought was type 2 . I presented at the doctor's surgery with constant bladder/uti issues,severe fatigue,excessive thirst etc .My sugars were 19 when tested and the next morning fasting sugars were 16. I had unexplained weight loss also.Unfortunately I have put on some unwelcome weight since starting insulin.

The diabetes specialist nurse and team I attended here in Ireland thought I was type 2 when I was initially diagnosed ..and I was put on two tablets a day. But my sugars were still high, even though I was eating such a small amount of carbs .I was told then that this determined that I was in fact type 1,or type 1 and a half ( lada) at the time which would progress to type 1..It was all explained very well to me and I had an amazing diabetes specialist nurse who helped me a great deal.Being told this news was a big shock to me but I began insulin therapy, and within a matter of weeks my needs for insulin increased a lot so I began a regime of 1 unit of novorapid to 7 carbs during the day ,and in the morning 1 unit to 3 carbs. It's more or less stayed at that ratio all these years.

I recently changed the hospital I attend to one more convenient to where I live and my new consultant sent me to get auto antibody tests and C- peptide test. I had my second visit with the team a few days ago.The Doctor who was standing in for him since he wasn't available informed me that my antibodies all came back negative and I'm producing a very small amount of insulin which she said means I'm type 2! I am shocked as I have been what I believe to be type 1 for 8 years...and I can't see how they can now say I'm type two..
I need insulin for ever single thing I eat! I have a Hb1AC of 46 which they told me is really good ,but it's not without a lot of hard work and effort,along with many correction injections for high sugars! I am practically a vegan which makes it a bit more of a challenge! When I wake in the morning I need insulin even if I don't eat breakfast to stop my blood glucose climbing.That's what always happens in the morning once I exercise at all, as in walking or housework! I have to inject 4 units to keep them from climbing.I am using a Dexcom G6 this last year or so which is an absolute game changer.

I just feel very confused hearing this and I find it hard to take or believe this news.
I'm unsure what it will mean going forward .
It's kind of been part of my identity this last 8 years having type 1,and I don't know how they can just turn around and say I don't! It's not like I particularly want to have type 1 by the way. ..I'd of course rather be told your diabetes has disappeared altogether.
I have been treated as a type 1 all this time .I need insulin,and I have needed it from the very beginning to stay well ..
Also surely the amount of insulin I take on a daily basis for every meal would make me very ill or cause death in a type 2!?
So I just don't get the thinking.
I have read that many type 1's produce a little insulin..Is this correct?
Also can my beta cells have been destroyed ,bar a few perhaps?from some other cause which may mean I wouldn't have antibodies? I did have a horrible virus before my diagnosis.I received my blood results this morning and my Anti Islet cell antibodies are 24 U/ ml
and my Anti tyrosine Phosphatase Ab1A-2. is <4
Anti ZnT8 antibodies are <2 Au/ml
C- peptide is 1.10 ug/L
Really be glad of your opinions on this and any advice offered..

 

[Juicyj]

Hello @Sobeit

Sorry to hear of the situation you are in, I am no doctor, but I base things simply on how I see them and if you need insulin to bring your glucose levels down then you are insulin dependent, as a t1d we still produce tiny amounts of insulin, the pancreas does not simply shrivel up and die, it functions at a much lower rate. At any rate what is most important is that you are taking insulin to manage your bg levels. I appreciate an accurate diagnosis would give you clarity but the way I see it, the most important thing about your situation is that you are taking the right medication to manage your BG levels.

Just a point in regards to your rising AM levels, when you wake try and have something to eat even a few mouthfuls of something like plain full fat yoghurt will trick your liver from releasing more glucose and so prevents the rise, you may still need a couple of units of insulin but what your experiencing is the dawn phenomenon which is the liver getting you out of bed.

 

[IanA123]

as a t1d we still produce tiny amounts of insulin

No we don't. Either that or the NHS are lying to us all

 

[HSSS]

I’m no expert on type 1 nor do I have sources to hand but I’ve often read that antibodies are not always present in type 1, especially some time after diagnosis (Which some drs still don’t realise) Coupled with the fact that type 2 typically have normal to high levels of insulin production whereas type 1 are very low to none it seems surprising they want to change your diagnosis to type 2.

Can you ask for another appointment for a second opinion/review?

Will a change in diagnosis affect your access to tech? Here in England it does.

 

[In Response]

as a t1d we still produce tiny amounts of insulin

No we don't. Either that or the NHS are lying to us all

It depends how long ago the autoimmune response started. But recent research (sorry, I do not have a link) shows that people with Type 1 for more than 10 years are still producing some insulin.

 

[Jasmin2000]

I would really appreciate any input from those who have experienced similar of from those of you who have anything to say that I should hear or learn of.

I was diagnosed in my 40's with originally what they thought was type 2 . I presented at the doctor's surgery with constant bladder/uti issues,severe fatigue,excessive thirst etc .My sugars were 19 when tested and the next morning fasting sugars were 16. I had unexplained weight loss also.Unfortunately I have put on some unwelcome weight since starting insulin.

The diabetes specialist nurse and team I attended here in Ireland thought I was type 2 when I was initially diagnosed ..and I was put on two tablets a day. But my sugars were still high, even though I was eating such a small amount of carbs .I was told then that this determined that I was in fact type 1,or type 1 and a half ( lada) at the time which would progress to type 1..It was all explained very well to me and I had an amazing diabetes specialist nurse who helped me a great deal.Being told this news was a big shock to me but I began insulin therapy, and within a matter of weeks my needs for insulin increased a lot so I began a regime of 1 unit of novorapid to 7 carbs during the day ,and in the morning 1 unit to 3 carbs. It's more or less stayed at that ratio all these years.

I recently changed the hospital I attend to one more convenient to where I live and my new consultant sent me to get auto antibody tests and C- peptide test. I had my second visit with the team a few days ago.The Doctor who was standing in for him since he wasn't available informed me that my antibodies all came back negative and I'm producing a very small amount of insulin which she said means I'm type 2! I am shocked as I have been what I believe to be type 1 for 8 years...and I can't see how they can now say I'm type two..
I need insulin for ever single thing I eat! I have a Hb1AC of 46 which they told me is really good ,but it's not without a lot of hard work and effort,along with many correction injections for high sugars! I am practically a vegan which makes it a bit more of a challenge! When I wake in the morning I need insulin even if I don't eat breakfast to stop my blood glucose climbing.That's what always happens in the morning once I exercise at all, as in walking or housework! I have to inject 4 units to keep them from climbing.I am using a Dexcom G6 this last year or so which is an absolute game changer.

I just feel very confused hearing this and I find it hard to take or believe this news.
I'm unsure what it will mean going forward .
It's kind of been part of my identity this last 8 years having type 1,and I don't know how they can just turn around and say I don't! It's not like I particularly want to have type 1 by the way. ..I'd of course rather be told your diabetes has disappeared altogether.
I have been treated as a type 1 all this time .I need insulin,and I have needed it from the very beginning to stay well ..
Also surely the amount of insulin I take on a daily basis for every meal would make me very ill or cause death in a type 2!?
So I just don't get the thinking.
I have read that many type 1's produce a little insulin..Is this correct?
Also can my beta cells have been destroyed ,bar a few perhaps?from some other cause which may mean I wouldn't have antibodies? I did have a horrible virus before my diagnosis.I received my blood results this morning and my Anti Islet cell antibodies are 24 U/ ml
and my Anti tyrosine Phosphatase Ab1A-2. is <4
Anti ZnT8 antibodies are <2 Au/ml
C- peptide is 1.10 ug/L
Really be glad of your opinions on this and any advice offered..

As @HSSS said not everyone with type 1 has autoantibodies and if you've been diabetic for some years those autoantibodies may disappear. Hence, it seems you are type 1 and your type 2 diagnosis was a mistake or a transition phase.

You're correct that type 1's can produce a little insulin from a few remaining beta-cells, but these are micro amounts (see here) and don't result in a shift to type 2. Clearly you are good on insulin and have worked out carb ratios that work so it looks like classical type 1.

No we don't. Either that or the NHS are lying to us all

I'm afraid we do but not sufficient to be of use (see link above) so only white lies

 

[HSSS]

your type 2 diagnosis was a mistake or a transition phase.

don't result in a shift to type 2.

Type 1 and type 2 do not turn into each other. They are different conditions caused by different problems despite some similarities and sometimes the same treatment (insulin). A type 2 going onto insulin doesn’t make them type 2. As far as I know, without a transplant, a genuine type 1 doesn’t begin making insulin agaIn. Any change in diagnosis between the two means one of those is/was a mistake.

It could be possible for a type 2 to then get an autoimmune reaction and become type 1 but honestly I think the very very vast number of drs would chalk that up to worsening type 2 as predicted , put them on insulin and never check the reasoning behind it. A type 1 I guess could become insulin resistant with associated metabolic issues (ie type 2) but again would that result in a separate type 2 diagnosis if they already had a type 1 label? Unlikely in reality.

 

[EllieM]

And don't forget that there are many other rarer types of diabetes. Probably the most common other types are T3c (damage to pancreas causing loss of insulin production, which can vary in intensity from needing no insulin at all to what is effectively T1 if the whole pancreas has been destroyed) and MODY (a genetic form of diabetes which has many different subtypes needing different types of treatment).

In the UK the T1 diagnosis is important because it gets you access to cgms and pumps. I'd hope that in other countries the tech might be dependent on the treatment needed rather than the specific diabetes label, but I suspect that varies.

 

[Jasmin2000]

Type 1 and type 2 do not turn into each other.

That's what I thought I said?

 

[HSSS]

That's what I thought I said?

Not sure how describing type 2 as a transition phase into type 1 is saying anything other than you think it’s possible to move between the two

By describing a shift from 1 to 2 (even though you say it‘s not happening here) implies you think it could happen

Perhaps it’s me nitpicking but if I can read it that way others could too. I just thought it best to clarify in case newbies or people who’ve been misled though it was possible.

For the record (not aimed at you) on the same subject using insulin doesn’t define which type you are. Some Type 2 (and some others) use insulin not just type 1.

 

[Jasmin2000]

Not sure how describing type 2 as a transition phase into type 1 is saying anything other than you think it’s possible to move between the two

Sorry that's a misunderstanding, I said that the diagnosis of type 2 was wrong and that there could be a type 1 transition phase, such as honeymoon period, or similar insulin producing phase, that caused misdiagnosis. There is no known transition phase from type 1 to type 2 and no, I don't think it's possible.

By describing a shift from 1 to 2 (even though you say it‘s not happening here) implies you think it could happen

Wow - you're telling me what I think again? I was answering OPs concern that the medics were unsure of type 1 or type 2 - I said having some insulin production in type 1 DOESN'T shift a diagnosis to type 2.

Perhaps it’s me nitpicking but if I can read it that way others could too. I just thought it best to clarify in case newbies or people who’ve been misled though it was possible.
For the record (not aimed at you) on the same subject using insulin doesn’t define which type you are. Some Type 2 (and some others) use insulin not just type 1.

And for the record, some type 1s that produce low levels of insulin are not type 2 and OP asked about the production of endogenous insulin in type 1.

Insulin production DOES play a part in diagnosis, along with long-term BG, and at the molecular level autoimmune factors, genetic mutations, and so on. There are also transitionary time-frames for different forms of diabetes, and the profile presented by the patient can lead to errors in diagnosis.

 

[Melgar]

I am currently in Snowdonia, Gwynedd visiting my family. The internet is flakey, but here goes. @Sobeit check out Autoantibody-Negative Type 1. It is subtype.

 

[Chrissyscraps7_]

And don't forget that there are many other rarer types of diabetes. Probably the most common other types are T3c (damage to pancreas causing loss of insulin production, which can vary in intensity from needing no insulin at all to what is effectively T1 if the whole pancreas has been destroyed) and MODY (a genetic form of diabetes which has many different subtypes needing different types of treatment).

In the UK the T1 diagnosis is important because it gets you access to cgms and pumps. I'd hope that in other countries the tech might be dependent on the treatment needed rather than the specific diabetes label, but I suspect that varies.

Google LADA. Another way of saying Type 1.5.

 

[HSSS]

Sorry that's a misunderstanding, I said that the diagnosis of type 2 was wrong and that there could be a type 1 transition phase, such as honeymoon period, or similar insulin producing phase, that caused misdiagnosis. There is no known transition phase from type 1 to type 2 and no, I don't think it's possible.

that makes more sense phrased that way.

Wow - you're telling me what I think again? I was answering OPs concern that the medics were unsure of type 1 or type 2 - I said having some insulin production in type 1 DOESN'T shift a diagnosis to type 2.

No, I’m saying it reads as if you think that way. Again the phrasing is ambiguous. If I read it a different way than you meant it others may well have too.

And for the record, some type 1s that produce low levels of insulin are not type 2 and OP asked about the production of endogenous insulin in type 1.

agreed

Insulin production DOES play a part in diagnosis, along with long-term BG, and at the molecular level autoimmune factors, genetic mutations, and so on. There are also transitionary time-frames for different forms of diabetes, and the profile presented by the patient can lead to errors in diagnosis.

agreed