Late onset Type 1

[Lemonie]

When I was first diagnosed the nurse said she wasn't sure if I had type 2 or late onset type 1. What are the differences between the 2 symptom wise and how will they test?

 

[sugar2]

Hi,

Sorry, not much help, but wanted to pass on something I learnt from a lady with late onset T1. It was assumed that she was T2, purely becasue of her age (mid 50s) and they seemed to ignore the fact that she was lovely and slim (she types jealously!). She was put on metaformin, and it was only when thsi didn't work, that they looked agian at her, and put her on insulin. The insulin works for her, but she still is not sure whether she is actually T1 or not. I aqssumed that untreated T1 led to massive weight loss etc, so t would be fairly obvious pretty quickly, but it isn't always the case. this is also complicated by the fact that some T2s need insulin.

In my (very simple) understanding, in T1 your body has destroyed its ability to make insulin, whilst in T2, your body makes the insulin, but is resistant to it, and can't use it effectively. I never quite understand why they call the 2 things the same name to be honest.

There is a test that they can do...but I am not sure what it is. I am sure someone with more knowledge will be along soon.

 

[Lemonie]

I had the weight loss (about a stone and a half) and then I stopped smoking and was eating like it was an Olympic event. I couldn't understand why I was staying the same weight. Thanks for the reply and going to take a list with me when I next go and see the nurse and am not being rushed out again.

 

[catherinecherub]

Have a read through this Lemonie,

http://en.wikipedia.org/wiki/Latent_autoimmune_diabetes

 

[Sid Bonkers]

I lost about 10lb prior to diagnosis, I thought it odd that my diet of ice cream every night was working so well :roll: So its not just T1's or LADA's it can happen to.

 

[phoenix]

It isn't easy, .
Though there are some adults that have a rapid onset of T 1 , it is more often a slower process with a gradual loss of beta cell function This results in similar symptoms to someone who is T2 and has a relative insulin deficiency. People who are diagnosed early in the process may be able to control their diabetes with oral medications or even diet and exercise for a while. Eventually though, whatever they do they will need insulin.
Tests that can help distinguish are those for a number of antibodies and C peptide which measures insulin production. In some parts of Europe people who don't fit the normal profile for T2 are routinely given antiGAD tests. (anti GAD is the most common antibody in LADA)

However, it isn't infallible Some people don't test positivive for antibodies (even some children don't). Some people who are claimed to be 'metabolically' T2 do...and these people are also likely to need insulin sooner than later.(so are they really T2?)

Whether tests are done to help diagnose whether they are type 1 or not very much depends upon where they live and who their doctor is. Many may stay diagnosed as type 2. In the UK this can limit their treatment (not eligible for either DAFNE courses or insulin pumps and more likely to be given mixed insulins rather than MDI)

I left it very late to go to a doctor. I had dropped from just over 10st which was slightly overweight to 7st 8lb underweight, I actually did that in 2 stages first I lost just over a stone without trying and was really happy to do that. Then about 18 months later I lost the rest in a very short time. I did have all the other classic symptoms (managed to put my head in the sand and ignore them )
At diagnosis , my fasting glucose was in the 20s. I had high ketones . The previous day I had had breathing problems when I tried to ride a bike. That's why I went to the doctors.
Nevertheless this could still have been neglected T2.
In hospital (not in the UK) They did tests and scans to eliminate other possibilities such as pancreatic cancer, fortunately all negative. They found very quickly that I was sensitive rather than resistant to insulin . I didn't need very large doses to bring my levels down. They did tests for the various antibodies and insulin production.
Then they really shocked me by telling me I had T1!

Personally ,when I read that someone on the forum has had recent rapid weight loss and very high glucose levels I always worry about a wrong diagnosis .

 

[moonstone]

Agree completely with Phoenix on the info given. I recently had my bloods retested as I was suspicious I'm not really a type 1 but it turns out I am. At diagnosis in March 2008 I was not making autoimmune antobodies. This time, in July 2010, I was. There were one or two other reasons for me doubting it too eg only requiring small doses of insulin and until August I'd never seen a ketone since I was first diagnosed. So you can't entirely rely on the autoimmune antibody test if they're absent. If they're there, then you know, but if they're not - they can apparently come + go at times. They also look at how you physically present as the simplest solution is usually the right one. So if you present as a typical type 2, and initial tests don't say otherwise, that's how you'll get treated. I also had a c-peptide test in July this year and was making very little insulin. So I am a type 1, and they said that since I clearly had it coming for a long time (in hindsight) then I am most probably LADA. I also agree with one of you above who said you don't know why they're even called the same thing - hear hear, I have to keep trying to explain to people that they're completely different diseases with some similarities - a type 2 doesn't have an autoimmune attack destroying their beta cells, whereas a classic type 1 does, and the management/treatment of the 2 diseases appears to be world's apart in almost every way as far as I can see.

 

[Polgara]

My husband was diagnosed with late onset type one in January. He was 42 at the time, lost 2 1/2 stome in 4 weeks over Christmas and had fasting sugars of 20. His GP dagnosed him as type 2 on a Monday evening - no ketones present. He went back to the dr on the Wednesday morning to be started on medication. We sat through an hour of T2 talk from the practice nurse before she tested again for ketones just to be sure. It was +++, and so an emergency hospital admission for an insulin drip. He wasn't quite into DKA, but very close.

 

[goji]

Personally I think there are more than just the four categories: T1/T2/LADA/MODY. I think the doctors just haven't got round to classifiying things properly yet and often don't do the right tests. What you get diagnosed with seems to depend on the doctor you see.

I got diabetes aged 20 but the doctors were confused about what type I am. I was always very thin which pointed toward T1, but I did not lose weight before diagnosis and I was not ketotic like a 'classical' T1. My blood sugars were not that elevated (fastings of 7, OGGT peak of 15). I did not produce antibodies although I have other endocrine antibodies (thyroid) and endocrine diseases. Technically I am classed as a T1 but this was always questioned by various Health professionals and at one point I got put on pills rather than on insulin.

I managed on very low doses of insulin for around 5 years (between 4-10 units of Mixtard per day). Now I take a more normal replacement dose.

My brother presented with the exact same type of diabetes aged 27 and has always been extremely skinny. Although he is on insulin he is still unclassified but the consultant is veering between MODY (even though he tested negative for this) and T2. He has been refused DAFNE training as he is not classed as a T1, yet I would be eligible and our diabetes is identical!!

So perhaps what you end up getting diagnosed with depends on the consultant's training/viewpoint.

 

[magicshaz]

On 23 Sept my partner (aged 43) was diagnosed with 'type 2' diabetes and told to take "one metformin a day, and I will see you next week" by his GP. he had supplied a urine test, but the gp did not follow up with glucometer check only sending him for a fasting glucose the following day, and we were going away that weekend. I am type two, and told him that he needed to take 2 tabs a day, and moved him up to that, and as he did not have a meter, I changed my lancet and tested him I was concerned his BM was climbing, but he said he was ok and refused to seek medical help. 6 days from diagnosis, he was admitted to hospital drifing in and out of conciousness with DKA. The blood gasses revealed a bm of 60 (meters dont register over 35 only say HI Ketones). His kidneys were 'stressed' and his core temp was 34. He spent 4 nights in ICU on a 'sliding scale'. He is now on 4 jabs a day. I was diagnosed 8 years ago (aged 47). The common denominator in both our diagnoses was I at the time was in a stressful position at work, working 7am to 10 pm 3 out of 5 working days, with no breaks (not even for the loo) He was promoted at the end of last year into a stressful position, 12 - 13 hour long days 5 days plus alternate saturdays. Literature states there is no link. How come I have not had the same reaction, and is his reaction more common than we think??

Also, why is the smell on the breath from ketones always described as 'pear drops'. This is very misleading, I kept checking his breath and all I could smell was something akin to farmyard manure (he has excellent oral hygiene) I was told in the hospital that this smell was more the 'ketones' smell. It certainly was not sweet!