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Do I need to know if I'm T1 or T2? Does it matter?

R

robine12

Newbie
Hi,

I was diagnosed 3 years ago with diabetes while working overseas in Laos. I was put on Metformin. I then moved to Thailand and saw a decent diabetic doctor but in both circumstances I was never told if I was type 1 or 2. My medication was simply changed according to my regular readings.

On return to the UK I was told by my diabetic nurse that it wasn't too important to know as, again, the medication is changed accordingly - and there was a cost to it as well.

Is it important to know? Does it matter? I had all the usual symptoms of losing lots of weight, thirst, cramps etc prior to diagnosis. My father's type 1 and we've had a family history of it.

Thanks.
Robin
 
If, as your profile says, you are on oral meds, that means you are Type 2. I think it is important to know which type you are. It will help you to follow the information on this forum too.
 
Hard to imagine you could be a type one and get by on oral meds all this time. You really need to know though so you know what you're dealing with. Can't believe the comment you got from the diabetes nurse over here - or maybe I can
 
Not to disagree with daisy, but I too started on oral meds after being misdiagnosed as T2 but actually being slow onset T1 and needing insulin after about two and a bit years. Broadly though if your current medication regime is working, then it's okay (at the moment). However if you're actually T1, you will need insulin at some point. Keep an eye on things and if you start struggling to keep good control despite best effots (and particularly if you start losing weight without trying) go back to the doctor for advice.

Unless there is something suggesting all is not well, i.e. your health or control deteriorates, they won't do extra testing in the UK as it is expensive. I don't think the nurse put it very well, but the point is a reasonable one. Unless they suspect you could be T1, what's the point in doing tests?
 
Thanks for your input guys. I didn't realise I'd not updated my profile and people actually look at it! Now updated. Do take a look if it means a different response.

I was also put on Lantus Solostar long-lasting insulin about 2 years ago after a small operation and have never come off it, if that makes a difference to your replies.

Cheers.
 
if it was me, I'd want to know, because (in my opinion) it makes it easier to understand and self-manage if you know what's going on in your body. I bet that nurse would want to know, if it was her.
 
I was diagnosed in April, put on insulin the next day and still have no idea what type i am as i have not seen anybody since early may. I expect one day i will find out some more details. :)
 
Two different diseases with different causes..mostly Auto immune for Type 1 ,so you may find you have other Auto immune conditions along side the Type 1, many do have. If you are Type 1 at least you will know to look out for other Auto Immune diseases. Also both have different treatments, yes some overlap..but having a Pancreas that does not produce any insulin is very different from one that produces some....or insulin resistance.
Go to your Consultant or HCP who deals with Diabetes and ask to know which you are.
To be honest three years is a very long time to have Type 1 Diabetes and only be on a Basal Insulin and just oral meds ,it does look like Type 2...but if you are Type 1 and the oral meds make your Cell's gobble the insulin up very fast and you eat a very strict, low sugar ,low carb diet. Maybe it is possible??

Anyway get tested and find out for your future health, I was told by the Eye specialist that Type 1's even with good control get the most eye problems, retinopathy, so you will need to be checked on a more regular time scale, which Type 1's are.

Also we have three/six monthly Endo visits for full bloods, which you may be missing out on if you are wrongly diagnosed.
 
Hi Robin!

I think it is really important that you find out if you're Type 1 or Type 2. I was misdiagnosed as Type 2 and eventually managed to get a GAD antibody test done - the result was Type 1. I actually have a condition called LADA (sometimes called Type 1.5) - it presents a bit like Type 2 in its early stages, but there is a much quicker progression. For me, I needed bolus insulin and it took a long time for the HCPs to realise that. I just couldn't eat without my BGs going very high. Mostly, though, I felt demoralised because no matter how much exercise I did and how careful I was with my food, I couldn't control it. It was a really miserable time. If I'd had the GAD antibody test when I was first diagnosed I could have had the correct treatment from the start and it would have saved me more than a year of feeling like a failure.

If you feel OK with your medication and have good control, maybe you don't feel you'd gain anything by knowing which Type you are, but surely you want to know how your condition is likely to progress? Anyway, if you do decide not to know, make sure you keep a very close eye on your post-meal readings so that you can move onto bolus insulin quickly if you need to. As you use insulin, I assume you test regularly before and after meals? (Type 2s on diet and oral medication don't always).

Incidentally, the registrar told me the GAD antibody test is about £180, so they only do it if you really make a case for it.

Good luck

Smidge
 
Fallenstar said:
Anyway get tested and find out for your future health, I was told by the Eye specialist that Type 1's even with good control get the most eye problems, retinopathy, so you will need to be checked on a more regular time scale, which Type 1's are.
Click to expand...
indeed. And Type 2s are at much more risk of cardiovascular complications than Type 1s, so it's important for them to keep an eye on that side of things.

Also, Type 1s have an easier time than Type 2s in getting blood test strips out of their GP. Sometimes.
 
Great question.

Personally I feel it's important to know so I can get to grips with how to control it. I'm one of those types that don't fit straight into the right pigeon hole so it's making it frustrating for me to get control.

I'm normal weight to start with, low carbing is only making me shed further weight, it's not making any difference to my readings anyway! So for me, I need to accept medication but of course they're scratching their heads to decide insulin now or later.

So they've put me on Gliclazide which is a pill that'll stimulate more insulin to cope with the higher sugar levels (I debated the logic of wearing down my Pancreas by forcing them to produce more insulin but they say there's no miracle pill that won't have downsides to it...)

However, I've today had blood taken (finally) for antibody testing to see if infact I've got a slow onset of Type 1 instead, but I have to accept that this may not be conclusive either.

Diabetes is a challenging condition and it's frustrating because everyone's different so no single solution can apply to everyone. At least we've got time to deal with it (there's worse things out there to be honest).
 
Hey Sanober!

Really pleased for you that you've had the GAD test done at last! Now maybe you'll get some answers! I'll keep my fingers crossed for you!

Smidge
 
Thanks Smidge, hope all good with you :)

let's see what enfolds, as you'll see from my latest HbA1c it's jumped up significantly! Yet I'm to give the Gliclazide a few months to work (were you told this?).

Good thing is the Diabetologist was encouraging me to self test at least once a day - now that's something a lot of non T1s DON'T get told!
 
Hi

Gliclazide should start working with a few weeks if not days; I think the GPs say 'month's to keep you at bay! When I went onto Sitagliptin after Met & Glic didn't have that much effect my GP said it would take 6 months to work; it took 2 days. Problem is as has been said is that there are so many variants of diabetes not just 'Type 1' and 'Type 2'. In my case sitagliptin is working well because it has yet another mechanism to Met & Glic i.e. it suppresses an enzyme that itself switches off insulin production whereas Glic stimulates the Pancreas. There aren't enought tests for the GPs to use and many are not really interested anyway; just select Type 1 or Type 2 and go for the favourite med......
 
Just wanted to say Sanober, I hope you get to the bottom of it soon ,You must feel like you are in limbo land with it all at the moment.

Good luck with the GAD test
 
Hmmmmmm thanks for confirming Daibell I should have challenged her further to be honest, I'll give it another 4 weeks and watch my daily carbs etc and see what happens.

Sitagliptin sounds interesting I may annoy them for that :lol: wonder if it will help my raised morning and post exercise readings, and the odd freaky night time spikes.

I've discovered that they pull in Biochemists and GPs into the 'Diabetes unit' at my local hospital, probably because of so many Diabetics now they need extra help...!

Many thanks Fallenstar, it's been a challenging year to say the least with various health issues that are seemingly unrelated to the Diabetes. I'm not holding hopes on the anti body test to be honest as it can be pernickety.
 
hi, the things i'm learning on this site is amazing. i thought there was only T1 and T2, didn't know anything about T1.5, which seems to fit with my own symptoms. never heard of a GAD test, never been told about one. i have an appointment with my diabetic nurse soon and i shall be asking many questions!!. the results Daibell has had with sitagliptin sounds great, so i'll be asking about that as well. one thing i was told on my last appointment, was that gliclazide is often only effective for six months or so, but the reason was unknown.
 
Hi Pieman

I've read that after a while on Glic, the pancreas tends to give up being stimulated hence it's effect is reduced. The article I read said that if you come off Glic for a few weeks the pancreas recovers and you can start again. I don't know how rigid the research was but sounds feasible. Sitagliptin has only been around for about 2 years and is a lot more expensive than Met or Glic or the Glitazones. Some NHS areas are a bit anti Sitagliptin due to the cost or aren't yet used to it being prescribed. My surgery tends to go for the Glitazones after Met & Glic but I didn't like the sound of the effect on the heart with it's water collection so my GP offered me sitagliptin as an alternative (after a slight altercation!)
 
Hi all!
Sanober said:
as you'll see from my latest HbA1c it's jumped up significantly! Yet I'm to give the Gliclazide a few months to work (were you told this?).
Click to expand...

Sanober - no, absolutely not! I was told it would either work within days or not at all! It didn't work, made me very ill and they took me off it within 4 days.

The problem with Glic is that it can work for Type 2s but it tends to lead to weight gain (and as 95% of Type 2s are overweight, this isn't an attractive proposition!) For Type 1.5 (LADA), it only works for a short time and then insulin is needed because the beta cells are all killed off and there is growing evidence that glic speeds this processs along. The only case where it seems to be really effective is one of the 1.5 (MODY) variants, where it can produce excellent results and avoid insulin indefinitely. (I think it's MODY 3, but I might be wrong about that!)

In my opinion, Glic should be taken with care and knowledge, but it seems to be bit 'trial and error' with many HCPs.

Smidge
 
Thanks guys for your replies. I saw my local diabetes nurse and she referred me to the specialist at the hospital. From today I've ditched all my pills except Metformin and statin and started on the quick acting insulin injections at mealtimes.

The specialist reckons I could be type 1 as she reckoned that most of my medicine wasn't working, my dad is type 1, I 'don't have the body type of a type 2' and I had the symptoms as well.

Felt a bit sick this afternoon but that might be due to anxiety about the whole thing, Went for a run and went low quite quickly despite only taking a smidgin of insulin at the meal before. Anyway, something to get used to. :crazy: :crazy: :crazy:
 
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