Mis-diagnosed

[luzanmurphy_]

After 2 months of dealing with type 2, my doctor told me today my GAD blood test results are positive for type 1. I have to urgently go to hospital tomorrow, stop the Metformin & Gliclazide & go straight onto insulin. I don't know what to expect. Anyone type 1 & can tell me what happens next. Feeling stressed

 

[TorqPenderloin]

You're going to be a fed a s*** load of information, none of it is going to make sense, and you're going to leave even more confused than when you came in. That's how I felt when I was diagnosed last year and that's how most people feel.

Just know that it's going to be okay. Take a deep breath, don't stress out, and try to learn what you can at your own pace.

Also, it's worth mentioning that in the 2 weeks after I was diagnosed, my blood sugar wouldn't ever drop below about 15 mmol/L. 7 months later, I now consider anything above 6mmol/l to be high. Eventually, all of this will start to make sense and then it just becomes second nature.

 

[tim2000s]

@LucySW @Daibell can you help? Sounds like LADA.

 

[luzanmurphy_]

Thank you TorqPenderloin, that is comforting

 

[luzanmurphy_]

What is LADA?

 

[TorqPenderloin]

What is LADA?

It's a ridiculous term I'm convinced was created to save money for government-run healthcare systems like the NHS (my understanding is that people with type 1 in the UK get all of their medications paid for).

It's basically type 1, but with a very long honeymoon period (the time when your pancreas still makes some insulin).

The problem is, some people are put on metformin and sulfonylureas instead of being given the insulin they need.

My advice to you is not to bring it up during your doctor's appointment tomorrow. I can tell you from experience that it's better to have insulin and not need it than to need it and not have it.

 

[GBS_82_]

It's a ridiculous term I'm convinced was created to save money for government-run healthcare systems like the NHS (my understanding is that people with type 1 in the UK get all of their medications paid for).

It's basically type 1, but with a very long honeymoon period (the time when your pancreas still makes some insulin).

The problem is, some people are put on metformin and sulfonylureas instead of being given the insulin they need.

My advice to you is not to bring it up during your doctor's appointment tomorrow. I can tell you from experience that it's better to have insulin and not need it than to need it and not have it.

I'm very new to this but it seems to me that LADA or (type 1.5) is really just a term created for type 1s that get inaccurately diagnosed as type 2. But I might be speaking out of ignorance. Have a good friend diagnosed type 2 three years ago (only in his 20s). He has made huge changes to his diet - he's as good as gold - and his readings are still 40mmoles/l +!!! Like me he's vitiligo (an almost sure sign of type 1) so I suspect he is LADO or 1.5 or just badly diagnosed.

I was diagnosed type 1 a month ago. Please don't get me wrong - I'd rather things were different - but it's really not that bad. Very easy to adjust to the injections and checking your levels is quite fun. I enjoy the challenge of trying to get my levels in check (although I can get down in they are stubbornly high).

I agree with Mahalo - the forum is great!

 

[TorqPenderloin]

I'm very new to this but it seems to me that LADA or (type 1.5) is really just a term created for type 1s that get inaccurately diagnosed as type 2. But I might be speaking out of ignorance. Have a good friend diagnosed type 2 three years ago (only in his 20s). He has made huge changes to his diet - he's as good as gold - and his readings are still 40mmoles/l +!!! Like me he's vitiligo (an almost sure sign of type 1) so I suspect he is LADO or 1.5 or just badly diagnosed.

I was diagnosed type 1 a month ago. Please don't get me wrong - I'd rather things were different - but it's really not that bad. Very easy to adjust to the injections and checking your levels is quite fun. I enjoy the challenge of trying to get my levels in check (although I can get down in they are stubbornly high).

I agree with Mahalo - the forum is great!

Type 1.5 behaves in a similar way to type 2 which is why it's often misdiagnosed, but it's not necessarily a term reserved for those who are misdiagnosed. With type 1.5 there is usually an obvious insulin deficiency, but not to the extent of type 1. Consequently, someone with type 1.5 may have only slightly elevated a1c levels at diagnosis which rarely happens with type 1.

Type 1.5/LADA stands for Latent Autoimmune Diabetes in Adults. I believe that name was given back when type 1 was considered "Juvenile diabetes." The problem is, plenty of adults have been diagnosed with type 1 so it's not a disease exclusive to children.

Generally speaking, the autoimmune aspect of the disease is much more aggressive in children with type 1 while an adult with type 1.5 may be able to live for decades without insulin even though the antibodies are present in their body.

Obviously, we don't know how long it's going to take for that autoimmune attack to finish our insulin-producing cells off which is why I think the "Type 1.5" term is silly. You technically don't have type 1.5 until you've had type 1 for more than a year (yes, that's dumb but it's essentially true).

 

[Mike d]

After 2 months of dealing with type 2, my doctor told me today my GAD blood test results are positive for type 1. I have to urgently go to hospital tomorrow, stop the Metformin & Gliclazide & go straight onto insulin. I don't know what to expect. Anyone type 1 & can tell me what happens next. Feeling stressed

There are enormous resources here so someone will be around to help you through @luzanmurphy_

Thoughts are with you so take care, stress not and know the experience that still astounds me with those generous enough to hold out their hand.

 

[kesun]

my understanding is that people with type 1 in the UK get all of their medications paid for.

All diabetics on medication get their prescription medications paid for on the NHS in England. The problem for many T2s is that their doctors won't give them a prescription for blood glucose test strips, whereas for T1 they will. But all their other medications, regardless of what illness they're for, are free.

The rest of us have to pay £8.20 per medication per prescription. I believe that in Wales and Scotland all NHS prescriptions are still free.

I think the term LADA comes from the days when T1 was known as juvenile diabetes. It sounds sill to label an adult developing T1 "juvenile", so the term "latent" was used instead.

Kate

 

[tim2000s]

There's basically a spectrum of Type 1 from very rapid onset which is typically seen in children through to very slow onset which is typically seen in adults. They all have ultimately the same effect, but the slow adult onset version is often misdiagnosed as T2. The reason the term LADA still exists is that you see both more rapid and slower onset T1 in adults, so it provides a way of distinguishing between patients, if not the condition itself.

I wrote a bit about it here: http://crick-tech-munch.blogspot.com/2016/02/latent-autoimmune-diabetes-in-adults.html

 

[Daibell]

Hi. Yes, as @tim2000s says, there is a spectrum of T1s from those who have T1 around birth due to very rapid islet cell destruction to those up to old age (highest reported is 90 years old!) where destruction can be delayed or be very slow. In many ways it's all T1, although you could argue that a T1 at birth will always be due to antibodies whereas later in life it could be a wider range of causes such as pancreatitis, viruses and so on. Whatever the cause, the result is cell death and low insulin production. Note that even birth T1s can have some insulin production so you can't differentiate. The acronym LADA implies just cell death thru antibodies so T1.5 is a bit broader or I call myself Late onset T1. You may feel a bit stressed but at least you have now been correctly diagnosed; I had to fight my ignorant GP to get insulin. You should be put onto two insulins i.e. Basal (24 hour) and Bolus (mealtime). It will take a few weeks to get your dosage right so the nurse should keep in contact. The Basal deals with the constant background output of the liver. The Bolus deals with mealtime glucose. You may have one Basal a day or it may be split am and pm. As soon as you can you need to start carb-counting i.e. match the number of Bolus 'shots' which you dial-up to the number of carbs in a meal. Some nurses make a meal of this. My lovely nurse showed me what to do to carb-count in 10 minutes. Come back here if you need more help.