Slow burn Type 1

[Gooner9]

hi, finally met my diabetes nurse, 7 months in. She wasn't happy with my treatment so far and asked me to go back to my GP as she thinks, after reviewing my diet and my general activity, that I may be 'slow burn T1' I've googled and again it's another confusing one and I'm not too clear on it. Does anybody know where I can find an idiots guide on it?
My extremely knowledgeable and helpful nurse advised that I go back to my GP now, rather than wait 3 months as advised, and ask for new meds and if I don't respond to them in a month or so to be referred to a specialist for a proper diagnosis- has anyone had the same experience? So to rabbit on, too much coffee and too soon!!

 

[Ljc]

Hi Gooner. Sorry but I have no experience with the type of D your nurse suspects you to have . However I know people here who do have personal up close experience who will hopefully be along soon.
I also hope your nurse is reporting her suspicions re your diagnosis to your gp, she sounds as though she is right on the ball, rather than trying like some do , trying to fit a round peg in a square hole.
Let us know how you get on.

 

[grovesy]

I have not heard any one mention a book on it, I think from what I have read it is not universally well recognised. It sometimes reffered to as Type1.5 .As Lin said there are few on here have. Some have struggled for years to get the right treatment.Your Nurse seems to be on the ball.

 

[Gooner9]

Thanks, just don't seem to be able to get on top of it, 4x metformin a day, decent diet, plenty of activity/exercise and no drop of any significance. Weight ok too.

 

[grovesy]

Thanks, just don't seem to be able to get on top of it, 4x metformin a day, decent diet, plenty of activity/exercise and no drop of any significance. Weight ok too.

From what I have read from what they have said this is quite a common response other have had to treatments.

 

[Northerner]

hi, finally met my diabetes nurse, 7 months in. She wasn't happy with my treatment so far and asked me to go back to my GP as she thinks, after reviewing my diet and my general activity, that I may be 'slow burn T1' I've googled and again it's another confusing one and I'm not too clear on it. Does anybody know where I can find an idiots guide on it?
My extremely knowledgeable and helpful nurse advised that I go back to my GP now, rather than wait 3 months as advised, and ask for new meds and if I don't respond to them in a month or so to be referred to a specialist for a proper diagnosis- has anyone had the same experience? So to rabbit on, too much coffee and too soon!!

Hi @Gooner9, I'm not sure of any particular guide available, but if you are a 'slow-burn' Type 1 you are most certainly not alone - there are many of us here, including myself! 🙂 Basically, it means that for some reason or other your beta cells that produce insulin have become compromised in some way - possibly an autoimmune attack, and you are not producing sufficient insulin to meet your needs. Eventually, your insulin production may dip to a point where you will need to inject (or pump) insulin in order to get decent levels. This sort of Type 1 is sometimes referred to as Type 1.5, or more often as LADA (Latent Autoimmune Diabetes in Adulthood). As it suggests, it occurs in adulthood - my impression is that the younger you are, the quicker the progression, but that's not always the case. My consultant thinks that I may have been able to just about keep my levels under some control (but not ideal) for quite some time due to the amount of exercise I do (I was running marathons and half marathons in the 18 months leading up to my diagnosis). Eventually, I contracted a virus which just overwhelmed my pancreas and I ended up in hospital with DKA Interestingly, my pancreas is still producing some insulin after 8.5 years since my diagnosis, so it's something that is impossible to put a timescale on - could take months, could take years, but with the right treatment it doesn't have to be a problem 🙂

I would definitely agree with your nurse - go back to your GP and ask (insist!) on a referral to a specialist. It's very important that you get a correct diagnosis so that you can be put of the correct and appropriate treatment - many Type 2 treatments (certainly, metformin) will have little or no effect since they are targeted at insulin resistance - LADA/Type 1.5 is concerned with insulin insufficiency. There are tests they can do to determine how much insulin you are producing, and also a test for antibodies to see if you may have suffered an autoimmune attack.

Good luck, let us know how you get on, or if you have any more questions 🙂

 

[Gooner9]

Hi @Gooner9, I'm not sure of any particular guide available, but if you are a 'slow-burn' Type 1 you are most certainly not alone - there are many of us here, including myself! 🙂 Basically, it means that for some reason or other your beta cells that produce insulin have become compromised in some way - possibly an autoimmune attack, and you are not producing sufficient insulin to meet your needs. Eventually, your insulin production may dip to a point where you will need to inject (or pump) insulin in order to get decent levels. This sort of Type 1 is sometimes referred to as Type 1.5, or more often as LADA (Latent Autoimmune Diabetes in Adulthood). As it suggests, it occurs in adulthood - my impression is that the younger you are, the quicker the progression, but that's not always the case. My consultant thinks that I may have been able to just about keep my levels under some control (but not ideal) for quite some time due to the amount of exercise I do (I was running marathons and half marathons in the 18 months leading up to my diagnosis). Eventually, I contracted a virus which just overwhelmed my pancreas and I ended up in hospital with DKA Interestingly, my pancreas is still producing some insulin after 8.5 years since my diagnosis, so it's something that is impossible to put a timescale on - could take months, could take years, but with the right treatment it doesn't have to be a problem 🙂

I would definitely agree with your nurse - go back to your GP and ask (insist!) on a referral to a specialist. It's very important that you get a correct diagnosis so that you can be put of the correct and appropriate treatment - many Type 2 treatments (certainly, metformin) will have little or no effect since they are targeted at insulin resistance - LADA/Type 1.5 is concerned with insulin insufficiency. There are tests they can do to determine how much insulin you are producing, and also a test for antibodies to see if you may have suffered an autoimmune attack.

Good luck, let us know how you get on, or if you have any more questions 🙂

I will do thanks, will try and get in to GP this week, cheers

 

[Robin]

Hi, I spent the first six months after (mis) diagnosis with my GP scratching her head wondering why Metformin made no difference at all, and Gliclazide not a lot! She was unaware that adults aged 50 could develop Type 1, but was aware that it 'might be a peculiar sort of Type 2' and referred me to the hospital. It was only on my second visit there that they tested me for GAD antibodies, which were positive, indicating an auto immune attack, and started treating me for Type 1.

 

[Gooner9]

Hi, I spent the first six months after (mis) diagnosis with my GP scratching her head wondering why Metformin made no difference at all, and Gliclazide not a lot! She was unaware that adults aged 50 could develop Type 1, but was aware that it 'might be a peculiar sort of Type 2' and referred me to the hospital. It was only on my second visit there that they tested me for GAD antibodies, which were positive, indicating an auto immune attack, and started treating me for Type 1.

Thanks Robin, it is looking that way I think. Struggling a little with it all at the moment, on diagnosis I thought I could just ace this, beginning to worry a little now.

 

[Ditto]

I didn't realise you can turn from a Type 2 to a Type 1. This is very scary to me because I'd never be able to look after myself the way you all do. I'm no good with numbers for a start and you have to count stuff. It makes me feel frightened.

I was thinking it was diabolical that you've only just seen a nurse 7 months along, but I've just realised as well that I've been diabetic a year and not seen anybody! This is disgusting. I might have accepted it sooner if I'd had help. I hope you get sorted asap.

 

[trophywench]

Don't worry Gooner - it's different things to get your head round, admittedly but none of the different types of diabetes are dead simple, so 'different' is all it is. We all get used to it, one way or the other and you will too!

 

[everydayupsanddowns]

I didn't realise you can turn from a Type 2 to a Type 1.

Well you can't. But you can have a diagnosis of diabetes which is categorised as T2 because you are 'not a child' and it is wrongly assumed that only children develop T1. Particularly if (as is not uncommon in the U.K. these days) you might be carrying a few extra pounds. To be honest sometimes just being over 30 is enough, no matter how slim a person is and how rapidly their symptoms develop.

Around half of people diagnosed with T1 are over 18, but the illusion still exists in some GP consulting rooms that it is a childhood condition.

Incidentally you can develop T2 diabetes alongside T1 - which is sometimes called 'double diabetes' but the two conditions are separate with completely different pathologies and one cannot turn into the other. 🙂

 

[Ditto]

That's a relief. Thank you. 🙂 We do have one T1 child (now a teenager) in the family, but dunno if the genes come from our side or theirs.

 

[Rosiecarmel]

Welcome 🙂 I'm a LADA diabetic. I was diagnosed type 2 last year aged 23. At one point I was on 4 metformin, 4 gliclazide, 1 max dose sitagliptin and eating barely anything with carbohydrates in yet my sugars were still up in the 20s. After 12 months of this, I finally was admitted to hospital where I saw a consultant. The consultant said "yep you're slow onset type 1 you should've been on insulin from day one!"

Do you test your blood sugars yourself? It's very possible especially with an hba1c that high you are actually slow onset type one.

I'd definitely recommend going back to your GP and asking for proper treatment.

 

[Gooner9]

Welcome 🙂 I'm a LADA diabetic. I was diagnosed type 2 last year aged 23. At one point I was on 4 metformin, 4 gliclazide, 1 max dose sitagliptin and eating barely anything with carbohydrates in yet my sugars were still up in the 20s. After 12 months of this, I finally was admitted to hospital where I saw a consultant. The consultant said "yep you're slow onset type 1 you should've been on insulin from day one!"

Do you test your blood sugars yourself? It's very possible especially with an hba1c that high you are actually slow onset type one.

I'd definitely recommend going back to your GP and asking for proper treatment.

Hi Rosie, thanks so much, I'm on 4 metformin and been told to ask for gliclazide just to prove they won't work. I do test but now only weekly as I'm normally in the 20's and was just getting down hearted, still in the 20's. I'll be back at my doctors this week and will push for better, thanks to everyone for their help.

 

[Rosiecarmel]

Hi Rosie, thanks so much, I'm on 4 metformin and been told to ask for gliclazide just to prove they won't work. I do test but now only weekly as I'm normally in the 20's and was just getting down hearted, still in the 20's. I'll be back at my doctors this week and will push for better, thanks to everyone for their help.

There are numerous hoops one has to jump through to get proper treatment. It shouldn't be this way, but it is. I don't know if the nurse explained it to you, but gliclazide stimulates the pancreas to produce more insulin. You will need to test regularly if you are put on it (especially if you drive)

If gliclazide doesn't work, it might be because your pancreas isn't producing any insulin, or very little so your nurse may be correct about being slow onset type 1.

 

[Gooner9]

Thanks Rosie, I'll get in the docs this week and let you all know how I get on, will be end of week as I'm away with work. Thanks again for all your help everyone.

 

[Northerner]

Thanks Rosie, I'll get in the docs this week and let you all know how I get on, will be end of week as I'm away with work. Thanks again for all your help everyone.

Good luck Gooner9 🙂 In my opinion you shouldn't have to 'try' gliclizide, the logical thing would be to refer you and give you the C-peptide and GAD antibody tests, so I would put that to your GP and see what he says 🙂

 

[sparklestar]

I am also a type 1.5, only that diagnosis didn't come until 3 years after I was diagnosed type 2 and ended up in hospital with DKA. Trust me, you don't want to go down that route so I would agree with Northerner and ask your GP about the antibody tests, rather than having to (possibly) waste time trying other tablets that it sounds as though your nurse doesn't think will help.

 

[Gooner9]

I am also a type 1.5, only that diagnosis didn't come until 3 years after I was diagnosed type 2 and ended up in hospital with DKA. Trust me, you don't want to go down that route so I would agree with Northerner and ask your GP about the antibody tests, rather than having to (possibly) waste time trying other tablets that it sounds as though your nurse doesn't think will help.

Hi, thanks, I will do, trying to get in today, will update when I've been in, cheers