What's in a name?

I often wish Type 1 and type 2 had completely different names.
The symptoms may be the same but management is very different.

As type 2 is most common (90% of people with diabetes have type 2), a newly diagnosed person with Type 1, can get very confused by forums like this and unnecessarily adjust their diet.

Yes, the terms are misleading. Eevn your suggestion of 'adiabetes' wouldn't work as not all T1/LADA is caused by auto-immunity e.g. GAD etc. Viruses are also a cause and I believe, for various reason, that caused my LADA. I might suggest that focussing on insulin dependence might be helpful. I believe the C-Peptide test is far more relevant than checking for antibodies as it measures your actual insulin output. Yes, I know there are T2s on insulin. Some of these will be slim mis-diagnosed T1/LADA like me and some others will be those with high insulin resistance where insulin my not be the best medication. Not all will agree with my input but there you go as the current definitions aren't useful either.

I think that even if new names were given, you'd still get people saying.... oh that's type1 or type2, because those terms have been around for so long and have become so ingrained. Medical professionals would probably do the same, we call it this now, but also known as type2 and possibly cause even more confusion. The media have no idea what they are publishing anyway, so they would still be creating confusion in the public regardless.

I'm insulin deficient and require both basal and bolus insulins, but I have what is caused CF diabetes (Cystic fibrosis) related diabetes, but mine was caused by daily use of steroids. However, not all people with CF related diabetes are insulin deficient and can become insulin resistant like type2. I just call mine "insulin deficient diabetes." It takes too long to explain to people. And there will probably never be a name for it.

I do call it other names, but I can't repeat those here on the forum.

Mustaffa said:

Does anyone else struggle with the terms Type 1 and Type 2 diabetes?
I am a Biomedical Scientist and have worked in the NHS for 40 years as a microbiologist.
Last July a month before my 60th birthdaday I was diagnosed Type 1 diabetic (1.5 LADA).
Like most healthcare professionals I immediatly thought they meant Type 2 because of my age.
Since then I have been on a steep learning curve which is easy for me because I know where to look and get information. However I'm sure it must be very scary for people who are not in my position.
One thing I have found is the term 'diabetes' is well known (sugar in the blood) but not what Type 1 and Type 2 mean. As terms they are not very meaninful and I find I am contantly explaining the difference even to some of my collegues.
Does anyone have a better way of describing these different diseases?
How about 'aDiabetes' for autoimmune Type 1 diabetes and 'mDiabetes' for metabolic Type 2 diabetes?
After all we don't say you have the disease 'sneezing' but you have a cold, flu or an allergy.

Click to expand...

Usually, when people get things mixed up, I just take it as an opportunity to educate them a little. I didn't know much about it either, and that was with it running in my family as well as hitting friends, and caring for a diabetic insulin-dependant cat for years. (The vet said he was a T2. He was a T3c, after pancreatitis. There's so many different kinds...!).

I don't think a name change'd help anything. People are stuck in their beliefs and don't really take time to learn about something until they're confronted with it personally. I know the bulk of my family wouldn't know what metabolic meant anyway, opposed to auto-immune. So I just shrug it off, and give the basics when asked.

Mustaffa said:

Does anyone else struggle with the terms Type 1 and Type 2 diabetes?
I am a Biomedical Scientist and have worked in the NHS for 40 years as a microbiologist.
Last July a month before my 60th birthdaday I was diagnosed Type 1 diabetic (1.5 LADA).
Like most healthcare professionals I immediatly thought they meant Type 2 because of my age.
Since then I have been on a steep learning curve which is easy for me because I know where to look and get information. However I'm sure it must be very scary for people who are not in my position.
One thing I have found is the term 'diabetes' is well known (sugar in the blood) but not what Type 1 and Type 2 mean. As terms they are not very meaninful and I find I am contantly explaining the difference even to some of my collegues.
Does anyone have a better way of describing these different diseases?
How about 'aDiabetes' for autoimmune Type 1 diabetes and 'mDiabetes' for metabolic Type 2 diabetes?
After all we don't say you have the disease 'sneezing' but you have a cold, flu or an allergy.

Click to expand...

Hi, I don't struggle with it. In a line of work I used to do involving promoting brands in a supermarket to members of the public ( furloughed now) if they mentioned they had diabetes, then most had type 2, we often chatted about it, but not many type 1's, if I did happen to chat with another type 1 is was great to chat about management and the up's and downs that go with it.
I'll stick with Type 1, as long as I know what I've got and how I manage it, then that's fine by me.

Type 1 - Alfred. Agnes
Type2 - Malcolm. Martha
LADA - Leonard. Linda
Brittle - Ben. Bertha.
Prediabetes - Paul. Paula.

Fill in as appropriate.

Keep safe

I follow up with my condition.

RH - Robert. Rhonda.

Hypoglycaemia. Harold. Henrietta.

Gotta hav a laff!

Lamont D said:

Type 1 - Alfred. Agnes
Type2 - Malcolm. Martha
LADA - Leonard. Linda
Brittle - Ben. Bertha.
Prediabetes - Paul. Paula.

Fill in as appropriate.

Keep safe

Click to expand...

My dad was called Alfred and he never liked it, and my mum's sister was called.........Agnes

Mustaffa said:

Does anyone else struggle with the terms Type 1 and Type 2 diabetes?
I am a Biomedical Scientist and have worked in the NHS for 40 years as a microbiologist.
Last July a month before my 60th birthdaday I was diagnosed Type 1 diabetic (1.5 LADA).
Like most healthcare professionals I immediatly thought they meant Type 2 because of my age.
Since then I have been on a steep learning curve which is easy for me because I know where to look and get information. However I'm sure it must be very scary for people who are not in my position.
One thing I have found is the term 'diabetes' is well known (sugar in the blood) but not what Type 1 and Type 2 mean. As terms they are not very meaninful and I find I am contantly explaining the difference even to some of my collegues.
Does anyone have a better way of describing these different diseases?
How about 'aDiabetes' for autoimmune Type 1 diabetes and 'mDiabetes' for metabolic Type 2 diabetes?
After all we don't say you have the disease 'sneezing' but you have a cold, flu or an allergy.

Click to expand...

Hi,

It's pretty simple for anyone who stops & enquires regarding my condition. (Catch me with a pen or meter.)

"My pancreas is shot & as a result I have to inject insulin in order to maitain BGs." Been doing it since I was a kid..
Though to be fair, the pen & meter's came along in my teens.
Personally, I'm more interested in prioritising the "tech" regarding managing my T1. Than a "rebrand" on my condition.

Mustaffa said:

Does anyone else struggle with the terms Type 1 and Type 2 diabetes?
I am a Biomedical Scientist and have worked in the NHS for 40 years as a microbiologist.
Last July a month before my 60th birthdaday I was diagnosed Type 1 diabetic (1.5 LADA).
Like most healthcare professionals I immediatly thought they meant Type 2 because of my age.
Since then I have been on a steep learning curve which is easy for me because I know where to look and get information. However I'm sure it must be very scary for people who are not in my position.
One thing I have found is the term 'diabetes' is well known (sugar in the blood) but not what Type 1 and Type 2 mean. As terms they are not very meaninful and I find I am contantly explaining the difference even to some of my collegues.
Does anyone have a better way of describing these different diseases?
How about 'aDiabetes' for autoimmune Type 1 diabetes and 'mDiabetes' for metabolic Type 2 diabetes?
After all we don't say you have the disease 'sneezing' but you have a cold, flu or an allergy.

Click to expand...

I’d rather be known as having autoimmune pancreatic deficiency

It sounds better than diabetes and it means I don’t have to be lumped with type 2s who often get very horrible stereotypes in media. When I say I have diabetes people just look at me blankly like “this boy is definitely lying” because they expect an old, overweight person (not that being old is a bad thing) but yeah

I don't struggle I know exactly what the difference is... but most others don't the just hear the word diabetic. And most when you talk to them describe T2 and assume it easy/safe/curable

Even some t2 i know assume they are t1 just because they take a small amount of insulin

Even some of the GP's and Nurses I have dealt with are not that great between the difference..... and when I was admitted to hospital with a suspected heart attack the hospital was terrible in general about diabetes

I think different terms should be used to differentiate the types

Mustaffa said:

Does anyone else struggle with the terms Type 1 and Type 2 diabetes?
I am a Biomedical Scientist and have worked in the NHS for 40 years as a microbiologist.
Last July a month before my 60th birthdaday I was diagnosed Type 1 diabetic (1.5 LADA).
Like most healthcare professionals I immediatly thought they meant Type 2 because of my age.
Since then I have been on a steep learning curve which is easy for me because I know where to look and get information. However I'm sure it must be very scary for people who are not in my position.
One thing I have found is the term 'diabetes' is well known (sugar in the blood) but not what Type 1 and Type 2 mean. As terms they are not very meaninful and I find I am contantly explaining the difference even to some of my collegues.
Does anyone have a better way of describing these different diseases?
How about 'aDiabetes' for autoimmune Type 1 diabetes and 'mDiabetes' for metabolic Type 2 diabetes?
After all we don't say you have the disease 'sneezing' but you have a cold, flu or an allergy.

Click to expand...

Hi Mustaffa and I hope you are getting to grips with your diagnosis?
I have had type 1 for 40 plus years now and used to resent the nomenclature because to me type 2 implied a failure of willpower whereas my own diagnosis was not avoidable.
I have now got more familiar with the causes of type 2 which turn out not to be greed or laziness and nor does it happen exclusively to inactive and overweight middle aged people.
Having looked at the history it is clear that the first symptom noticed in ancient times was one diabetics share in common - hyperglycemia detected in the urine - and that as recently as the 1920s the medical world imagined that both types of diabetics lacked insulin whereas it was realised by the 1950s and 60s with hormonal assys now possible that type 2s suffer from hyprinsulemia and type 1s suffer from the opposite. Today doctors still treat the symptom that is easiest to measure i.e. the blood glucose and this may be appropriate for a type 1 or 1.5. In both types of diabetes the root cause seems poorly understood although the clinical success of low carb diets (Virta Health and other trials or low cal diets which also restrict carbs - Direct Study) suggests that we are closer in the case of type 2 to knowing what works to get the metabolism working normally. Type 1 seems to be more about getting better technology to mimic the action of the pancreas as far as realistic solutions go possibly because we don't seem to know what triggers the destruction of the beta cells).
The pharma model of type 2 treatment focuses on blood sugar lowering but there is no profit in treating the root cause of the problem so we carry on prescribing blood sugar lowering agents when the solutions would seem to be a lot simpler and cheaper!
As to your original request for a descriptor I think diabetes is so common and carries with it such sterotypes that you may need to spend a little time explaining about insulin which I believe is the key differentiator rather than the high blood sugar symptom that we share.
Now that \i am middle aged too though not overweight, I do have to challenge those ideas too!

I do not struggle with terminology type 1 or 2 is a modern thing.

Only recently I became aware of what each number meant because it not something I ever took notice of.

Basically I inject insulin and other is diet only let the person asking give it a number.

bmtest said:

I do not struggle with terminology type 1 or 2 is a modern thing.

Only recently I became aware of what each number meant because it not something I ever took notice of.

Basically I inject insulin and other is diet only let the person asking give it a number.

Click to expand...

This is partly wrong though as t2 can inject insulin and assume they are t1 because they do.. but no they are t2 which is insulin resistant and insulin is needed to add to what they are producing where t1 does not produce insulin

My dog recalls to Rex but ignores his long kennel club registered name. So it can always be said whats in a name and sometimes its a surprise if not a mouthful.

Lastly a medic could diagnose a symptom with a name and that defines the illness but is it correct to restrict something to a name and fence it off.