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Hi from a newly diagnosed LADA

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
I

Issy

New Member
Relationship to Diabetes
Type 1
Hi all,
I am new to the forum and new to diabetes. I was first diagnosed in December, and treated for type 2. My Diabetic nurse put me on Metformin and gliclazide, to reduce my rather high HBA1C at 11.6%. The dose was increased at the beginning of January to maximum dose but it did not reduce my BG consistently. I had another HBA1C test which came back at 10.8% My doctor and DBN did suspect that I may well be a type 1 as I am fit and healthy and not overweight, and with no history of diabetes in the family, so I was sent for a Gad test. It has finally come back as Type 1 LADA. I have been put on one daily dose of Tresiba to see if things settle down. I am also trying to follow a lower carb diet, eating more healthy fats but find there is a lot of contradictory advice regarding healthy eating for diabetes. I am sure the information on this forum will help me.
I also find it difficult to find information on LADA so am following guidelines for Type 1, which I assume is correct?
The 1.5 confuses me a bit!
From being a very healthy person who has never been on any medication, this has come as a shock and I am struggling a bit with the fact that I have this for life, and will depend on insulin and constantly checking my levels.
Any advice would be gratefully received.
 
Welcome.
Some just think of it a slower onset of Type1, your story seems to bear it out, though your team seemed to be on the ball, and your diagnosis sorted. We have many members who were initially thought to be Type 2 because of age, and some of them took months and even years to get the right diagnosis.
 
Hi Issy and welcome to the forum 🙂

Have you been put onto another insulin as well or just the Tresiba for now? There will come a day when you need a rapid acting insulin as well and I personally would say the sooner the better so it would be worth bringing up with your team, having 2 kinds of insulin would mean you wouldn't necessarily have to follow quite a low carb diet and means more flexibility, your pancreas may also last a bit longer giving out some of your own insulin should a rapid acting be introduced often referred to as a honeymoon period

Anyways feel free to post any questions you may have and join in conversations if you wish 🙂
xx
 
Kaylz said:
Hi Issy and welcome to the forum 🙂

Have you been put onto another insulin as well or just the Tresiba for now? There will come a day when you need a rapid acting insulin as well and I personally would say the sooner the better so it would be worth bringing up with your team, having 2 kinds of insulin would mean you wouldn't necessarily have to follow quite a low carb diet and means more flexibility, your pancreas may also last a bit longer giving out some of your own insulin should a rapid acting be introduced often referred to as a honeymoon period

Anyways feel free to post any questions you may have and join in conversations if you wish 🙂
xx
Click to expand...
Just Tresiba for now. My DBN wants to wait until everything settles a bit. I am due to have another blood test in 2 weeks to see whether the number has come down. We are then reviewing the insulin. I will certainly mention it to my team. Thank you.
 
Yeah - follow the guidelines for T1 cos it is T1 to all intents and purposes.

Could you check with your surgery whether they have you registered as a T1 or still as a T2? It's actually important to have yourself recorded properly because T1s are allowed to have certain things which sadly T2s are not in the main, such as insulin pumps and 'flash' glucose monitors. Some GPs insist on lumping anyone who isn't classic T1 (diagnosed aged 7 in a coma) whether 1.5 like you or people who've had pancreatectomies because of cancer (the T3s) in with the T2s and won't even refer them to a proper hospital outpatient diabetes clinic to get proper up to date advice and treatment. Sounds like your lot are on the ball though - you're lucky cos it still is a postcode lottery.
 
trophywench said:
and 'flash' glucose monitors
Click to expand...
that depends where the poster is based, in Scotland they do prescribe to Type 2's if they are on insulin xx
 
Kaylz said:
that depends where the poster is based, in Scotland they do prescribe to Type 2's if they are on insulin xx
Click to expand...
I was not aware of that I wonder if they all know that , as I think we have a few Scottish Type2 on Insulin.
 
grovesy said:
I was not aware of that I wonder if they all know that , as I think we have a few Scottish Type2 on Insulin.
Click to expand...
I assume if they had any contact with their team they would as most areas in Scotland were making patients aware as soon as it became available to them xx
 
trophywench said:
Yeah - follow the guidelines for T1 cos it is T1 to all intents and purposes.

Could you check with your surgery whether they have you registered as a T1 or still as a T2? It's actually important to have yourself recorded properly because T1s are allowed to have certain things which sadly T2s are not in the main, such as insulin pumps and 'flash' glucose monitors. Some GPs insist on lumping anyone who isn't classic T1 (diagnosed aged 7 in a coma) whether 1.5 like you or people who've had pancreatectomies because of cancer (the T3s) in with the T2s and won't even refer them to a proper hospital outpatient diabetes clinic to get proper up to date advice and treatment. Sounds like your lot are on the ball though - you're lucky cos it still is a postcode lottery.
Click to expand...
I am registered as a type 1.5 LADA. The surgery have said that they are happy to refer me to hospital if I want but at the moment I am happy with the support they are giving me. My nurse has worked in the diabetic ward of a hospital until 2 years ago, when she became our local diabetic specialist. I do not qualify for flash monitor at the moment but I have bought freestyle Libre sensors which I am using with the app on my phone. Makes such a difference. My fingers have become pin cushions!
I know it does not always give an accurate reading, so do double check lows and highs and morning readings with my accu check.
Thanks for your advice
 
welcome to the forum @Issy

The .5 part of 1.5 which was confusing you is a bit of a nonsense really. I dont think 1.5 formally exists as a recognised condition, it’s more a shorthand for LADA (latent autoimmune diabetes in adulthood) which as TW points out is a form of T1. We use it here as it‘s a bit more instictively understandable for non-medical types.

Some people who develop T1 later in life have a slower rate of destruction of beta cells... so you can reach a ‘tipping point’ for diabetes diagnosis, but still have a fair amount of beta cell mass, and may even respond well to T2 meds for a year or more, before the gradual decline in beta cells mean you need insulin.

Your rate of progress seems quite rapid, so you seem likely to be more on the T1 end of the spectrum... so I’d agree with @Kaylz that adding mealtime replacement insulin sooner rather than later would be worth asking for. Partly so you can get used to it... partly so that you learn the ’proper’ roles of the different insulins (background insulin isn’t supposed to be dealing with meals at all, it’s only supposed to be mopping up glucose trickling from the liver)... and also partly to help support and protect your remaining beta cells for as long as possible.

There are folks with T1 for 70+ years who still have a tiny amount of homegrown insulin production. And it’s worth keeping if you have it, as it helps smooth off the edges of glucose response But switching on and off when needed.
 
everydayupsanddowns said:
welcome to the forum @Issy

The .5 part of 1.5 which was confusing you is a bit of a nonsense really. I dont think 1.5 formally exists as a recognised condition, it’s more a shorthand for LADA (latent autoimmune diabetes in adulthood) which as TW points out is a form of T1. We use it here as it‘s a bit more instictively understandable for non-medical types.

Some people who develop T1 later in life have a slower rate of destruction of beta cells... so you can reach a ‘tipping point’ for diabetes diagnosis, but still have a fair amount of beta cell mass, and may even respond well to T2 meds for a year or more, before the gradual decline in beta cells mean you need insulin.

Your rate of progress seems quite rapid, so you seem likely to be more on the T1 end of the spectrum... so I’d agree with @Kaylz that adding mealtime replacement insulin sooner rather than later would be worth asking for. Partly so you can get used to it... partly so that you learn the ’proper’ roles of the different insulins (background insulin isn’t supposed to be dealing with meals at all, it’s only supposed to be mopping up glucose trickling from the liver)... and also partly to help support and protect your remaining beta cells for as long as possible.

There are folks with T1 for 70+ years who still have a tiny amount of homegrown insulin production. And it’s worth keeping if you have it, as it helps smooth off the edges of glucose response But switching on and off when needed.
Click to expand...
Thank you so much for this advice. It is all beginning to make sense now! I will certainly discuss this with my nurse at my next appointment.
 
Welcome to the forum @Issy from another late starter. I am glad that your team are on the ball, and would reiterate the importance of being labelled as T1, which LADA is just with a slower onset.

Although your Practice nurse has had experience at the hospital I think it would be worth getting a referral to the specialist team, as this will give you access to wider range of resources to help you with managing your diabetes.

Using Bolus insulin will make life a lot more flexible once things have settled down. Well worth discussing this next time. It would also help to avoid overloading your remaining Beta cells as others have said.

Lots to get your head round, and this is a good place to get information and support from those that are managing their condition on a daily basis. Just ask.
 
Thank you. I appreciate all the advice I have been given. So pleased I joined the forum! I will discuss all this at my appointment in 2 weeks time. There is a lot to get my head around but I have found a lot of help on this forum already! Thank you all. I don’t feel so alone now 🙂
 
Hello @Issy welcome to the forum. 🙂 Glad you found us and so glad you have a great team, I agree with @SB2015 hospital specialist will make sure you are getting the correct treatment. I can call my hospital DSN & Dietician any weekday if I have a question or concern so getting a referral would widen your options to keep your big D under control.
 
KARNAK said:
Hello @Issy welcome to the forum. 🙂 Glad you found us and so glad you have a great team, I agree with @SB2015 hospital specialist will make sure you are getting the correct treatment. I can call my hospital DSN & Dietician any weekday if I have a question or concern so getting a referral would widen your options to keep your big D under control.
Click to expand...
I will definitely make sure I get a referral. Thank you 🙂
 
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