Diagnosis of Diabetes type 1.5, anyone?

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manu

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Hi,
I was just wondering whether people in the UK are being diagnosed with LADA (or Diabetes type 1.5), or they are simply being diagnosed with Diabetes type 1.

My diagnosis of diabetes was done outside the UK; being not British I decided to attend a clinic only when I actually needed injections.

I know it's a bit of a silly question, but my DNS nurses refer to me as a patient with an "early diagnosed" (atypical) diabetes type 1, so I was wondering whether this distinction is not applied in practice.

Thanks 🙂

Manu
 
Yes MANU, there's a few of us on here. I was originally diagnosed Type 2 in September last year and changed to LADA in March. I'm not on insulin yet as it seems I have sufficient function left in my pancreas to get by with pills for the moment. There are a few of us 1.5s on here and it seems to be getting more common, as does the opposite type MODY (Maturity Onset Diabetes in the Young).
 
I see, so they do make a distinction.
In my case I got diagnosed straight away as I was tested for antibodies. After that I managed for about 8 months with a very strict diet. By the time I got my first appointment in the UK, I was already needing medication, so I started with insulin immediately.
 
I don't know about the others but at my initial diagnosis, assumptions were made based on my blood glucose levels and my weight. It was only after some months having real problems with the medications and the discovery that there is no family history of any kind of diabetes, coupled with the fact that I have two other immune deficiency problems (pernicious anaemia and an adrenal insufficiency) that further investigations were carried out. They showed that I am neither Type 2 nor Type 1, but LADA and I fit all the criteria for that type. The latest theory for what's happening to me is that it's a result of many years of medically instigated 'steroid abuse'. I had eczema very badly for nearly 30 years and was prescribed massive doses of steroids throughout that time in a futile effort to control it* (as creams, injections and as pills). As a result, all my major organs have been affected to some degree with my pancreas sustaining the most damage.

* No-one has been able to find a sensible reason why it cleared up, I'm just glad it did.
 
manu said:
Hi,
I was just wondering whether people in the UK are being diagnosed with LADA (or Diabetes type 1.5), or they are simply being diagnosed with Diabetes type 1.
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Neither. They are nearly all diagnosed as T2, then can find it almost impossible to get their records corrected and find they are blocked from DAFNE and other courses.

Should really be diagnosed as T1 though since thats effectively what it is, in treatment terms.
 
VBH said:
...Should really be diagnosed as T1 though since thats effectively what it is, in treatment terms.
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Is that true though? If Type 1, it's pretty straghtforward - straight on insulin, but we have members here that (to my knowledge) have been on other medications for well over a year before insulin is required, making the distinction a very important one as treatment options are different.

It is thought that, had I sought help earlier (i.e. before I got DKA!) I would have been in a similar position. I began with symptoms around two years before diagnosis - lost 2st in weight gradually with no explanation, had the thirst, peeing etc. The consultant thinks I was effectively 'diet and exercise controlled' to some extent because I was running long distances regularly (although finding it increasingly difficult, in retrospect). I put most of my symptoms down to my age.
 
That's not right in my case VBH. I'm now listed as 1.5 but do not yet need insulin, although that day may not be far off, at the moment I'm still on fairly low dosages of Glucophage SR and Sitagliptin. When I was initially diagnosed, I was told I'd need insulin in 5 to 10 years, depending on how well managed I was, 15 if I was very lucky. Once the diagnosis was amended that changed to between 3 and 6 years tops, depending on how long my pancreas lasts. Thus, for treatment purposes I'm still pretty much a Type 2. The only difference is I'm tested a little more regularly than many, HbA1c and Pee every 3 months instead of every 6 and will have my GAD and Beta cell function tested twice yearly unless I start to show problems.
 
Sorry, I oversimplified.

LADA is effectively slow onset T1 (MODY is even slower). So although at diagnosis the treatment can be closer to T2, a LADA will need insulin at some stage where a T2 may not. Plus with most T1s insulin resistance is not a big factor, where it is for most T2s.

But the problem is more of an administrative one, rather than anything else. Most T2s do not see consultants but are generally seen by GPs. Those T2s who see consultants or other specialist units are, more often than not, those who have problems with control. Where a T1 with good control is going to keep having access to specialists, a T2 with reasonable control may never have the opportunity.

This varies wildly around the country of course.

But T1 and T2 are treated differently in other ways and one of the most significant is education. Although a T1 may have a significant wait to get onto DAFNE a T2 has very little chance (if any at all) of getting on DAFNE.

But while awareness of LADA is becoming more common amongst medics, they are frequently diagnosed initially as T2 on the assumption that since they are over 18, it cannot be T1. Getting that diagnosis changed in the records can be difficult.

So access to some of the services which a T1 can normally expect can be held back from a LADA simply because of a misdiagnosis in the first place.

How people who are diagnosed correctly as LADA in the first place fare with those services I am not sure. If they are seen more as an insulin-using T2 than a T1 then they may run into similar problems in terms of access to services.

So although the treatment may be more similar to T2 initially, its the long term treatment and access to services which is more likely to be a problem if misdiagnosed in the first place.
 
Northerner said:
It is thought that, had I sought help earlier (i.e. before I got DKA!) I would have been in a similar position. I began with symptoms around two years before diagnosis - lost 2st in weight gradually with no explanation, had the thirst, peeing etc. The consultant thinks I was effectively 'diet and exercise controlled' to some extent because I was running long distances regularly (although finding it increasingly difficult, in retrospect). I put most of my symptoms down to my age.
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I got diagnosed just by chance as I come from a 15 year history of hypos (in fact, I was being investigated for reactive hypoglicaemia associated with stress rather than diabetes!). So I was found positive to antibodies when my HbA1C was only 5.4. I think I've been thirsty as far as I can remember, but the extra insulin production made it difficult for me to lose weight for a long time. I started losing weight when these hypos stopped by following a controlled diet with nearly no simple sugars.
I still have no clue about how long I might have been diabetic...



VBH said:
...

But the problem is more of an administrative one, rather than anything else. Most T2s do not see consultants but are generally seen by GPs. Those T2s who see consultants or other specialist units are, more often than not, those who have problems with control. Where a T1 with good control is going to keep having access to specialists, a T2 with reasonable control may never have the opportunity.

This varies wildly around the country of course.

But T1 and T2 are treated differently in other ways and one of the most significant is education. Although a T1 may have a significant wait to get onto DAFNE a T2 has very little chance (if any at all) of getting on DAFNE.

But while awareness of LADA is becoming more common amongst medics, they are frequently diagnosed initially as T2 on the assumption that since they are over 18, it cannot be T1. Getting that diagnosis changed in the records can be difficult.

So access to some of the services which a T1 can normally expect can be held back from a LADA simply because of a misdiagnosis in the first place.

How people who are diagnosed correctly as LADA in the first place fare with those services I am not sure. If they are seen more as an insulin-using T2 than a T1 then they may run into similar problems in terms of access to services.

So although the treatment may be more similar to T2 initially, its the long term treatment and access to services which is more likely to be a problem if misdiagnosed in the first place.
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All this is very interesting, thanks for telling me, I actually wasn't aware of these differences.
Having been diagnosed outside the UK made things easier for me but it also made me unaware of the current NHS procedures and classification.
This is all extremely unfair, from my perspective everyone (whatever the type of diabetes) should have the chance to attend a diabetes clinic, independently from good or bad control. Maybe I am biased but I still remember when I first told my GP that I had been diagnosed with T1 and that I did not need any insulin yet... she wouldn't believe me! Thankfully, she referred me to a consultant.
It sounds like I really have to consider myself lucky enough to be classified as type 1.
 
I was diagnosed by my Dr as a type 2 due to a random blood test at my usual 6 month check at the surgery, having had no diabetic symptoms at all. I was admitted to hospital to have my gall bladder out (it wasn't done as I wasn't then in any pain, so they didn't operate) but they did various tests while I was there and the consultant said I had been misdiagnosed and was an -ongoing Type l or more properly LADA as the GAD antibodies and C-peptide test showed that conclusively.

My own Dr, not surprisingly, says that he doesn't agree with this as I would be on insulin now (2 yrs down the road) if I were really LADA (late onset diabetes of adulthood is not found in 64 year olds, he says). I don't care what anyone calls it as long as I get ongoing treatment from my consultant and my diabetic care team - and I am presently still on meds and being well looked after, so I consider I'm lucky.
 
I don't personally see why it's such a problem for the medical profession to accept that someone's pancreas might pack up for whatever reason at any age. Other organs do, why not that one? From the rather simplistic explanation I got when first diagnosed: Type 1 means your pancreas doesn't make sufficient insulin for your body to maintain itself; while Type 2 means that your body can't efficiently use the insulin your pancreas is still making.

The situation I appear to be in is that my pancreas is still making sufficient insulin that I don't require to top up by injection yet, but not enough to keep me healthy without the pills. I'm neither fish nor fowl as far as diabetes goes, but then I always was a square peg and I don't much care what label they put on me as long as I get the appropriate treatment.
 
As I think we've agreed before, we seem to be in the same category, Alison, and - yes, as long as the treatment we get is appropriate (I'm still yet to go onto insulin - yeah!) the label doesn't bother us.

What do you put on your travel insurance though ? Say type 1 and they seem to want to load you, say type 2 and I'm telling porkies but getting a better insurance rate. I say I'm diabetic, controlled by diet and medication only and they tend to draw their own conclusions....but would I be covered if anything happened ?
 
vince13 said:
As I think we've agreed before, we seem to be in the same category, Alison, and - yes, as long as the treatment we get is appropriate (I'm still yet to go onto insulin - yeah!) the label doesn't bother us.

What do you put on your travel insurance though ? Say type 1 and they seem to want to load you, say type 2 and I'm telling porkies but getting a better insurance rate. I say I'm diabetic, controlled by diet and medication only and they tend to draw their own conclusions....but would I be covered if anything happened ?
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That's what I'll say too - I haven't actually been out of the country since I was diagnosed, though I will be going over the Spain for a couple of days next month. It's the truth after all. As for being covered, I should think you would be as you have not lied to them. It's not your fault you don't fit in their neat little box now is it?
 
AlisonM said:
That's what I'll say too - I haven't actually been out of the country since I was diagnosed, though I will be going over the Spain for a couple of days next month. It's the truth after all. As for being covered, I should think you would be as you have not lied to them. It's not your fault you don't fit in their neat little box now is it?
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I suppose that the old terms IDDM and NIDDM (insulin dependent diabetes mellitus and non-insulin dependent diabetes mellitus) are probably the most appropriate terms to use for things like insurance, although I have no idea if these terms are recognised by the insurance companies.
 
Blind them with science eh?
 
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