Gone from diagnosed type 2 to now being type 1

[Psycon]

Hey all. Ok last October I was diagnosed type 2 diabetic, and now I have changed surgery and had a new diabetic review with a new nurse and she has said I am not type 2 but type 1.5 or slow onset type 1 as it's known. I did wonder as my bmi is 22 and am 33
. Have been told I may be put onto inclin instead of tablets which isn't a problem as my dad is type 1 and am used to it. Is this a common thing is my question?

 

[Catharine]

Hey all. Ok last October I was diagnosed type 2 diabetic, and now I have changed surgery and had a new diabetic review with a new nurse and she has said I am not type 2 but type 1.5 or slow onset type 1 as it's known. I did wonder as my bmi is 22 and am 33
. Have been told I may be put onto inclin instead of tablets which isn't a problem as my dad is type 1 and am used to it. Is this a common thing is my question?

Hiya, I had the same thing! Was diagnosed at 24 as being type 2 in 2005 and then in 2010 it was decided I was type 1! So now it's insulin all the way! x

 

[robofski]

I was diagnosed Type 2 six years ago by the practise nurse, now on insulin and seeing a DSN and she says no, you're a Type 1, she also mentioned "Slow Onset Type 1". From what I can gather misdiagnosis is common!

 

[trophywench]

Took a good friend of mine over 8 years to actually get an appt with a consultant and a C-peptide test and prove she'd always been T1 - which both she, her GP and everyone who knew her all agreed she must be anyway (and she'd ditched the Metformin after approx 2 months of it not working, her BGs getting progresively worse and feeling like sh(oo)t on a stick - and had just been on MDI ever since that)

Main trouble was she'd avidly completely changed her diet on diagnosis and ate shedloads of carbs as advised which she never had before that ... and still (having reverted to approx 80g/day as previously) can't shift the weight she gained doing it .....

 

[Northerner]

It does seem to be more common than you'd think. I get the impression that loss of beta cell function happens more slowly the older you get so if you go to the doctors early enough with symptoms you're more than likely to be diagnosed Type 2 if you're over 35 (or 33 in your case!). Pretty sure I would have been as I had symptoms two years prior to diagnosis, but only sought help when I got a virus and my poor pancreas couldn't keep me functioning any more - ended up in hospital with DKA and diagnosed Type 1. Since diagnosis though (4 years) I've gradually reduced my basal insulin until finally, a couple of months ago, I found I don't need it at all unless I get ill or lazy!

Quite a few members have come here with what seems like awful control, but their GPs have insisted they must be type 2. It's only after hearing experiences here and places like this that they question this and finally get a correct diagnosis. We have even had one member who was diagnosed as Type 1 just before he turned 40, then when he did was told by a GP he must be Type 2 as he was too old for Type 1! 😱

Good to see you have a correct diagnosis Psycon! 🙂

 

[Psycon]

It does seem like it's more common than I thought. Does seem hard to tell at the early stages but at least I now know. Have to see the docs again Mon so will most probably find out if I am going to get put on insulin then

 

[Monica]

My friend was diagnosed with gestational diabetes 13 years ago. Went straight on insulin and never came off it. Only this year they decided to do the test and found that she's a type 1.
I'm only guessing, but I think she didn't have gestational diabetes, but got type 1 while pregnant.

 

[Julia]

A table in "pumping insulin" (Walsh & Roberts, 2006) caught my eye the other day (page 280).

Differences in the three major types of diabetes:

TYPE 1
Avg Age at Start: 12
Typical age at start:3-40
% of all diabetes: 10%
Insulin problem: absence
Antibodies: ICA, IA2, GAD65, IAA

TYPE 1.5/LADA
Avg age at start: 46
Typical age at start: 20-70
% of all diabetes: 15%
Insulin problem: deficiency
Antibodies: mostly GAD65

TYPE 2
Avg age at start: 61
Typical age at start: 35-80
% of all diabetes: 75%
Insulin problem: resistance
Antibodies: none

The thing that I was really surprised at was that this implies there are more people with type 1.5/LADA than type 1!

 

[Northerner]

That's really interesting Julia, thank you 🙂 I'd never seen it quantified before. As I said before I was 49 but with symptoms for about 2 years prior, so the age of 46 is almost spot on for me! (As a T1.5, that is, rather than the T1 label I carry). Perhaps DUK should do an awareness campaign about T1.5, given that most people who end up with the diagnosis will probably think they couldn't possibly have diabetes, being too old and not conforming to the T2 stereotype.

 

[Mark T]

That's a very interesting table, thank you Julia 🙂

I was diagnosed at almost 36 but I had some (not zero) GAD65. But I didn't have enough GAD65 to be classified as a Type 1.

 

[schmeezle]

Hi Psycon,
Not sure how common, but I know I was in the misdiagnosed pool for some time.........as T2 also was advised to eat an over-abundance of food...........

 

[RachelT]

TYPE 2
Avg age at start: 61
Typical age at start: 35-80
% of all diabetes: 75%
Insulin problem: resistance
Antibodies: none

Ok, so i'm secretly glad to be decidedly non-average...but 61!!!!! Try 31, i demand i re-count!!!😉
If only it was that simple, nobody'd ever be mis-diagnosed ever again....

 

[DeusXM]

The issue is that many doctors assume that the type of diabetes you have is entirely dependent on your age. However, I've read somewhere that there are more people diagnosed with T1 in their 20s than those under 10. Because T1.5 tends to include residual insulin production, it's frequently mistaken for T2.

There's an interesting corollary to this too. I've found that as you get older, people assume your existing diabetes type 'must' be T2. Evidently there's some sort of Logan's Run thing I've managed to avoid where everyone with T1 is 'eliminated' at the age of 25. Now I get nurses and doctors telling me I'm 'too young' to have diabetes (I'm 28) and that I should have been more attentive to my lifestyle. It's at that point I tend to tell them I can't really be bothered to listen to their treatment ideas, as they quite clearly haven't bothered to read my file and see the bit where it clearly has a date of diagnosis over from the last century.

 

[Mark T]

This is the problem with statistics, they can be skewed to mean almost anything and just because you fit into a statistical grouping doesn't mean that is you. At least the table had the good sense to say "typical".

I saw a good presentation here:
www.diabetesgenes.org/sites/default/files/ATHtalk.PPT

Note: I did try to find an indirect link to this from the diabetesgenes website

On page 5 of that presentation is a fairly useless (because it is missing the scale) diagram showing a bell curve of the distribution of various types of diabetes.

However, I've seen it written in a few places that many people believe diabetes to be a continuum of the same disease. It's almost as if there is a shopping list of things that could cause problems and you just tick which ones you want (or not) 😱

 

[Andy HB]

I've been confused about this for quite some time now because it seems to me that surely the criteria for treating someone should be what the symptoms are?

For example, how much insulin are they producing and how insulin resistant they are? Answer those questions and the treatment is then apparent .... well, until the diabetes fairy waves her wand again!

Who cares whether a person is Type 1, Type 2, Type x.x (apart from those who don't want to be associated with one group or another for various reasons). After all, a Type 2 who no longer produces any insulin will have to be treated in exactly the same way as a Type 1, do they not?

Andy 🙂

 

[Robster65]

I've been confused about this for quite some time now because it seems to me that surely the criteria for treating someone should be what the symptoms are?

For example, how much insulin are they producing and how insulin resistant they are? Answer those questions and the treatment is then apparent .... well, until the diabetes fairy waves her wand again!

Who cares whether a person is Type 1, Type 2, Type x.x (apart from those who don't want to be associated with one group or another for various reasons). After all, a Type 2 who no longer produces any insulin will have to be treated in exactly the same way as a Type 1, do they not?

Andy 🙂

You're surely not expecting the NHS to spend money finding out these things are you?? 😱

That would involve expensive tests and knowledge to interpret the results. Surely, far better to ust look at age, BMI and a 1960s Landybird book of diabetes, then prescribe diet and exercise for 3 months and see how things go.

(but I agree 100% that type is a convenient label that signposts a range of treatments)

Rob

 

[Andy HB]

I'll leave how those questions are answered to people with more knowledge and expertise than I!

 

[Dizzydi]

It is all very interesting reading !!

Made me look at the letter the consultant sent to my gp - who stated with - -Think type 2, cannot rule out Type 1 due to weight loss will do following tests.

HbA1C
GAD65
Thyroid

Consultant then wrote with results saying HbA1c 8.3 😱
Full blood count normal
Thyroid normal

Is the full blood count the GAD65?

I was diagnosed at age of 35, metformin straight away, then after 12 months Levemir and then another 8 months Novorapid. I know Type 2 is a progressive illness - but considering the diet and exercise how come I needed more medication and insulin, when some T2 can come of meds completely - Confused

But at the end of the day I'll be whatever they want me to be so long as I get the medication i need to keep as well as possible (\/'s to the D)

ps something a dr said to me recently in hospital made me ponder

He said why are you Diabetic (diagnosed at 35, look at how skinny you are etc etc)? I said cause my blood sugars are excessively high without medication

He said I understand that but I think there is another illness which is to do with blood disorders that we have not yet quite discovered how it really works but it is not Diabetes of any kind - I just gawped at him at this point I think

 

[DeusXM]

Who cares whether a person is Type 1, Type 2, Type x.x (apart from those who don't want to be associated with one group or another for various reasons).

The distinctions are actually pretty important - T1 and T2 are completely different conditions which both result in high blood sugar. They don't even share the same symptoms - T1 causes weight loss and DKA, T2 causes weigh gain.

If a T2 doesn't produce insulin, technically they're a T1. T2 is more about insulin resistance and by extension, insufficient insulin production. Therefore the treatment methods also need to be completely different. For the overwhelming majority of T2s, adding insulin is a bad idea as it won't resolve the underlying insulin resistance and could in fact make it far worse. Conversely, treating a T1 with any T2 medication will end in pretty disastrous results.

T1 is ultimately a far more acute condition (that doesn't mean it's harder, by the way!). Leave a T1 untreated and they'll probably be dead in less than a week. Leave a T2 untreated and they could live for several years, although doubtless they wouldn't enjoy them.

 

[mcdonagh47]

. For the overwhelming majority of T2s, adding insulin is a bad idea .

Wrong ! Insulin always works for T2s and makes control much easier. It rests the Beta Cells and preserves some natural function for as long as possible. Most T2s resist insulin but when they are finally allowed to have it they mostly think, "what on earth was I fighting against, this makes control comparatively straightforward".
Some Insulin Resistance is caused by malformed insulin ( missing the tethers to anchor itself in the insulin receptor port on the cell). Exogenous insulin is always perfectly formed and overcomes that problem.
For the overwhelming majority of T2s adding insulin is an extremely good idea. But they will be padded off with palliatives until insulin becomes absolutely necessary.
Some radical thinkers suggest anyone showing pre-diabetes, or any of the other aspects of the Metabolic Syndrome, should start on insulin to rest the Beta cells and postpone the dx of T2.
40% of T2s are on insulin but indications are that about 60% should be on it.